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Facilitating
Inventorising
Advising
EVALUATION OF
THE CANCER PLAN 2008-2010
Prof. Dr. Elke Van Hoof
Dr. Eline Remue
Dr. Ir. Liesbeth Lenaerts
Ellen De Wandeler
Benoit Mores
Jelle Goolaerts
Régine Kiasuwa
September 2012
Consignment number: D2012/2505/38
1
Author: Elke Van Hoof, Liesbeth Lenaerts and Eline Remue
How to refer to this document VAN HOOF, E., LENAERTS, L., REMUE, E. 2012. Evaluation of the
Cancer Plan 2008-2010, Scientific Institute of Public Health, Cancer Centre, 163p (D2012/2505/38).
Copyright statement
This work is licensed under a Creative Commons Attribution-Non-commercial-No Derivative Works 2.0
Belgium. This means that the user may distribute, copy or pass on the work, if the name of the author
is mentioned (1), the work is not used for commercial purposes (2), and the work is not re-worked (3).
Visit http://creativecommons.org/licenses/by-nc-nd/2.0/be/deed.nl to see a copy of the licence.
External validation:
Renée Otter (NKP monitor for the Netherlands)
Acknowledgement:
The Cancer Centre expressly wishes to thank the Belgian Cancer Registry, the Inter-Mutual Insurance
Agency, the FPS Public Health and the NIHDI for providing the necessary information and reading
through the work. Finally we thank the members of the Advisory Committee and the Cancer Centre’s
Coordination Platform for reviewing and commenting on the present document. The members of the
Advisory Committee and the Coordination Platform are:
V. Quoidbach (Policy Unit of L. Onkelinx, Ministry of Social Affairs, Public Health and the
Environment); C. Decoster, S. Van den Bogaert, I. Van den Brempt (FPS Health, Food chain safety
and environment), P. Vandenbulcke, K. Colaert (Flemish Agency of Care and health); S. Debled, R.
Lonfils (Minister of Health, Childhood and Youth Welfare); C. Jaminon (Ministry of the Germanspeaking Community); M. Vos, PH. de Generet, M. Deguerry (Ministry of the Brussels Capital Region);
R. De Ridder, C. Cauwenbergh, F. Thijs, P. Specenier, H. English, M. Lipszyc (NIHDI); C. Van Hul, D.
Feron (Insurance Committee, NIHDI); F. De Smet (CM Landsbond); J. Peeters, H. Van Oyen, F.
Renard (SIPH); M. Peeters, S. Van Belle (College of Oncology); P. Coucke, P. Scalliet (College of
Radiotherapy); S. Beken, G. Musch (FAMHP); S. Driesse, I. Paul (Wallonia Region); E. Van Eycken
(Belgian Cancer Registry); J. Vlayen (KCE – Federal Health Care Knowledge Centre); D.
Vandersteichel (Foundation against Cancer); H. Verhaegen (Flemish League Against Cancer); H. Van
Brabant (CEBAM – Belgian Centre for Evidence-Based Medicine); V. Fabri (National Inter-Mutual
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Insurance College); L. Doughan (National Nutritional Plan); D. de Valeriola, JB. Burrion (Jules Bordet
Institute); M. De Ridder (VUB); M. Piccart (ULB); M. Hamoir (UCL); Y. Beguin (University of Liège); J.
Weyler (UA); L. Bleyen (University of Ghent); I. Vergote, E. Van Cutsum (KULeuven); N. Ectors
(Superior Health Council); J. Bury (Santhea); P. Smiets (Wallonia Federation of Hospitals); J. Pauwels
(Care Network Flanders); JN. Godin (Cobeprive/Becoprive); M. Hamoir (Belgian Hospitals
Association); D. Verhulst, C. Dejaer (Coordination of Brussels Institutions for welfare work and health
care); J. De Smedt (Domus Medica); T. Delbeau (Scientific Society of General Medicine); M. Fierens
(League of Health Service Users); P. Vanden Berghe (Flanders Palliative Care Federation); V. Baro
(Wallonia Palliative Care Federation); D. Verhulst (Europe Hospitals); A. Vandenbroucke (Reference
Community Centre); D. Razavi (Brussels Centre of Psycho-Oncology); W. Distelmans (Cédric Hèle
Institute); F. Meunier (EORTC); D. Claeys (College of Surgeons).
We would also like to thank G. Haelterman (FPS Public Health, Safety of the Food Chain and the
Environment) and P. Meeus (NIHDI) for their constructive comments on this document.
Mention of the members of the Advisory Committee and the Coordination Platform as validators and
commentators does not imply that they necessarily agree with everything that is stated in this
document. The contents and findings presented in this document are the responsibility of the Cancer
Centre.
3
TABLE OF CONTENTS
LIST OF ABBREVIATIONS .................................................................................................................... 6
THE CANCER PLAN 2008-2010 ............................................................................................................ 8
HISTORY ............................................................................................................................................ 8
CANCER IN BELGIUM ....................................................................................................................... 9
OUR HEALTH: A PRIORITY............................................................................................................. 16
CANCER AND PUBLIC HEALTH ..................................................................................................... 17
EVALUATION OF THE CANCER PLAN.............................................................................................. 19
CONSTRUCTION OF THE EVALUATION OF THE CANCER PLAN .............................................. 19
LIMITATIONS OF THE CANCER PLAN 2008-2010 EVALUATION ................................................ 20
RESULTS 2011: THEORETICAL BACKGROUND TO THE IMPLEMENTATION OF THE CANCER
PLAN 2008-2011................................................................................................................................... 22
IMPLEMENTATION OF THE CANCER PLAN ................................................................................. 22
IMPACT EXPERIENCED IN THE FIELD (via the LimeSurvey) ....................................................... 22
RESULTS.......................................................................................................................................... 25
DOMAIN 1: PREVENTION AND DETECTION ............................................................................ 25
ACTION 1: REIMBURSEMENT OF CONSULTATIONS TO QUIT SMOKING..................................... 25
ACTION 2: DETECTION AND COUNSELLING OF PEOPLE AT RISK WITH A GENETIC
PREDISPOSITION FOR DEVELOPING CANCER........................................................ 31
ACTION 3: EXTENSION OF THE AGE RANGE FOR VACCINATION AGAINST THE HUMAN
PAPILLOMAVIRUS FOR GIRLS FROM 12 TO 18 YEARS........................................... 34
ACTION 4: IMPROVING THE DETECTION AND EARLY DIAGNOSIS OF BREAST CANCER......... 39
ACTION 5: SYSTEMATIC SCREENING OF CERVICAL CANCER ..................................................... 45
ACTION 6: CONSULTATION TO PREVENT HEALTH RISKS ............................................................ 49
ADDITIONAL ACTION: IMPROVE DETECTION AND EARLY DIAGNOSIS OF COLORECTAL
CANCER......................................................................................................................... 52
DOMAIN 2: CARE, TREATMENT AND SUPPORT OF THE PATIENT ..................................... 55
ACTION 7: SPECIFIC SUPPORT FOR THE PATIENT WHEN THEIR DIAGNOSIS IS
COMMUNICATED .......................................................................................................... 55
ACTION 8: RE-EVALUATION OF THE MULTIDISCIPLINARY ONCOLOGICAL CONSULTATION
(MOC) ............................................................................................................................. 59
ACTION 9: INTRODUCTION OF CARE PATHWAYS FOR CANCER PATIENTS .............................. 65
ACTION 10: PSYCHOSOCIAL SUPPORT TO PATIENTS IN THE ONCOLOGICAL CARE
PROGRAMMES ............................................................................................................. 70
ACTION 11: FINANCING OF DATA MANAGERS IN THE CONTEXT OF THE ONCOLOGICAL CARE
PROGRAMMES ............................................................................................................. 75
ACTION 12: DEFINITION AND FINANCING OF A PAEDIATRIC ONCOLOGICAL CARE
PROGRAMME ................................................................................................................ 80
ACTION 13: TREATMENT OF RARE TUMOURS................................................................................ 83
ACTION 14: CERTIFICATION OF THE ONCOLOGICAL NURSE TITLE ............................................ 87
4
ACTION 15: IMPROVING THE COVERAGE OF CANCER MEDICINES BY THE OBLIGATORY
HEALTH INSURANCE ................................................................................................... 90
ACTION 16: SUPPORT OF RADIOTHERAPY AND MEDICAL IMAGING........................................... 93
ACTION 17: STRUCTURAL SUPPORT FOR TISSUE BANKS FOR CELL THERAPY AND UNITS
FOR CELL THERAPY WITH HAEMATOPOIETIC STEM CELLS AND UMBILICAL
CORD BLOOD................................................................................................................ 97
ACTION 18: IMPROVED REIMBURSEMENT OF ADDITIONAL COSTS ASSOCIATED WITH
CANCER THERAPY..................................................................................................... 101
ACTION 19: INSTITUTE THE FUNCTIONAL REHABILITATION OF CANCER PATIENTS IN
REMISSION.................................................................................................................. 106
ACTION 20: DETERMINING THE CONDITIONS FOR THE RECOGNITION OF A DISABILITY
CAUSED BY CANCER TREATMENT.......................................................................... 108
ACTION 21-22: SUPPORT FOR PARENTS OF CHILDREN WITH CANCER AND ACCESS TO
PSYCHOLOGICAL SUPPORT OR PARTICIPATION IN SELF-HEP GROUPS ......... 110
ACTION 23: STRUCTURAL FINANCING OF THE CHAIN OF PAEDIATRIC CARE ‘CONTINUED
CARE FOR CHILDREN’ ............................................................................................... 112
ACTION 24: SUPPORT FOR PILOT PROJECTS IN CLINICAL ONCOGERIATRICS ...................... 115
ACTION 25: IMPROVE THE AVAILABILITY OF PALLIATIVE CARE FOR CANCER PATIENTS .... 121
ACTION 26: INITIATIVES IN CONSULTATION WITH THE AUTHORISED FEDERAL MINISTERS 126
DOMAIN 3: RESEARCH, INNOVATION AND EVALUATION.................................................. 129
ACTION 27: ESTABLISHING A TUMOUR BANK............................................................................... 129
ACTION 28: STRUCTURAL FINANCING OF THE COORDINATION OF TRANSLATIONAL
RESEARCH IN HOSPITALS ........................................................................................ 132
ACTION 29: SUPPORT FOR TRANSLATIONAL RESEARCH .......................................................... 132
ACTION 30: APPLICATION OF HADRON THERAPY IN BELGIUM ................................................. 134
ACTION 31: REINFORCE THE BELGIAN CANCER REGISTRY ...................................................... 136
ACTION 32: ESTABLISHMENT OF THE CANCER CENTRE ........................................................... 138
CONCLUSION..................................................................................................................................... 140
INTRODUCTION............................................................................................................................. 140
GENERAL DISCUSSION................................................................................................................ 140
GLOSSARY ......................................................................................................................................... 149
LIST OF FIGURES .............................................................................................................................. 152
LIST OF TABLES ............................................................................................................................... 154
REFERENCES .................................................................................................................................... 156
APPENDIX .......................................................................................................................................... 161
5
LIST OF ABBREVIATIONS
ATU
Temporary Authorisation for Use
(authorisation for temporary use of pharmaceuticals)
BC
The Cancer Centre’s Advisory Committee
BELdART
Belgian audit project for clinical radiological services
BHTC
Belgian Hadron Therapy Consortium
CHI
Cedric Hèle Institute
CI
Confidence interval
CLB
Centre for Student Guidance
CMI
Centre for Medical Innovation
CP
The Cancer Centre’s Coordination Platform
CPO
Centre for Psycho-Oncology
CR
Crude Incidence Rate
CRi
Cumulative risk
CT
Computed Tomography
EBMT
European group for blood and marrow transplantation
EPAAC
European Partnership for Action against Cancer
FAMPH
Federal Agency for Medicines and Health Products
FANC
Federal Agency for Nuclear Control
FARES
Fund for Respiratory Diseases
FASFC
Federal Agency for the Safety of the Food Chain
FOBT
Faecal occult blood test
FPS
Federal Public Service
FTE
Full time equivalent
GMF
Global Medical File
GP
General Practitioner
HLA
Human Leukocyte Antigen
HPV
Human papillomavirus
IARC
International Agency for Research on Cancer
ICD
International Classification of Diseases
IMA
Inter-Mutual Insurance Agency
KCE
Knowledge centre
MAF
Maximum invoice
MD
Ministerial Decree
MDPB-R
Belgian Marrow Donor Programme Registry
MOC
Multidisciplinary Oncological Consultation
NCCP
National Cancer Control Programme
NEHAP
National Environmental Health Action Plan
6
NETCORD
International NetCord Foundation
NIHDI
National Institute for Disease and Disability Insurance
NIS
National Institute of Statistics
NGO
Non-Governmental Organisation
OCP
Oncological Care Programme
OECD
Organisation for Economic Co-operation and Development
PVS
Persistent Vegetative State
RARECARE
Surveillance of Rare Cancers in Europe
RD
Royal Decree
NURSING HOME
Nursing Homes
SCK CEN
Belgian Study Centre for Nuclear Energy
TNM
Tumour Nodule Metastasis
VLK
Flemish League Against Cancer
UN
United Nations
VRGT
Flemish Association for Respiratory Health and Tuberculosis Control
WHO
World Health Organisation
WSR
World age-standardised incidence rate
7
THE CANCER PLAN 2008-2010
HISTORY
In March 2008, the Cancer Plan 2008-2010 was launched by Minister L. Onkelinx. In Belgium
government policy was already focused on cancer issues. For example, on 21 March 2003 a RD came
into effect that specifies the standards with which a programme for basic cancer care and an
oncological care programme (OCP) must comply, in order to be recognised. In 2007 the White Paper
“Action against cancer in Belgium: Facing up to the challenges of tomorrow” was published [1]. This
paper was written by a work group consisting of oncologists, haematologists and Belgian specialists of
the first order and listed the needs and requirements that must be met for improving cancer treatment.
In preparation for the National Cancer Plan 2008-2010 Laurette Onkelinx, Minister of Social Affairs
and Public Health in charge of Social Integration, arranged round-table discussions with a variety of
stakeholders. A range of priorities was identified as a result of these round-table discussions with
experts and people with experience. Thus in March 2008 the ‘National Cancer Plan 2008-2010’ was
born. This plan contains 32 actions divided over 3 domains. The government made available for this –
and for the plan ‘Priority to the chronically sick!’ – 380 million euros over several years and clearly
defined the responsibilities. The FPS Public Health and the NIHDI are responsible for implementing
and putting into practice the vast majority of the measures and actions.
After the launch of the National Cancer Plan in March 2008, it was re-shaped into ‘Cancer Plan 20082010’. The federal states undertook to participate in the preparation and development of the further
extension of the Cancer Plan. All political levels jointly determine the priorities for future policy and
participate in developing it, each with respect to their own competence and policy. In 2012 we have a
Cancer Plan in which each political level employs its expertise and ability to improve the fight against
cancer.
In 2009, the European Commission launched a proposal that called for joint efforts to tackle cancer
issues as efficiently as possible [2]. In the context of the ‘Action against Cancer’ programme, the
European Commission wanted to encourage its Member States to optimise the fight against cancer in
every country. At the same time the World Health Organisation (WHO) was promoting the introduction
of National Cancer Control Programmes (NCCP) [3].
8
CONTENTS OF THE CANCER PLAN
The Cancer Plan 2008-2010 consisted originally of 32 actions divided into 3 domains:
Domain 1: Prevention and screening;
Domain 2: Care, treatment and support for patients;
Domain 3: Research, innovation and evaluation.
The 32 actions each define a particular theme and are further divided into measures (at least 1 per
action) that set out the specific steps to be taken. The original Cancer Plan 2008-2010 contained 61
such measures. A budget has been estimated and established for each measure. In March 2009,
March 2011 and September 2012 (subject to availability) Minister Onkelinx presented a progress
report monitoring the measures taken and the budgets.
The Cancer Plan not only includes measures for cancer patients. Within the Cancer Plan many
transversal measures have been set out (that may also be beneficial for patients with other chronic
illnesses).
The Cancer Plan is one of the aspects of the policy to improve the fight against cancer. In addition
there are other actions still running that may have a direct or indirect impact on one of the proposed
objectives of the Cancer Plan. Some examples: actions taken with regard to patient safety, actions to
do with health promotion performed by the Communities/ Regions, the National Environmental Health
Action Plan (NEHAP), the National Food and Health Plan (NVGP), and initiatives that are connected
with palliative care. The Cancer Plan reinforces policies with regard to the fight against cancer.
CANCER IN BELGIUM
In 2011 Belgium had a population of 11,007,020. The life expectancy at birth was 82.43 years for
women and 77.22 years for men.
Cancer incidence in Belgium, 2004-2009
(All invasive cancers)
Men
WSR
Years
Total
CR
2004
2005
2006
2007
2008
2009
32,466
32,299
31,890
32,401
32,738
32,754
638.2
631.9
620.0
625.3
626.6
621.7
369.3
363.3
354.7
356.0
352.3
347.5
CRI
Total
36.1
35.5
34.9
35.1
34.7
34.5
26,190
26,140
26,226
27,100
27,605
27,818
Women
CR
WSR
493.3
490.0
488.6
501.6
507.2
507.2
277.4
275.3
273.9
278.2
277.6
276.8
CRI
Total
26.7
26.4
26.5
26.7
26.8
26.8
58,656
58,439
58,116
59,501
60,343
60,572
Total
CR
WSR
564.2
559.4
552.9
562.2
565.7
563.3
315.1
311.4
307.1
310.8
308.8
306.3
CRI
31.1
30.7
30.4
30.7
30.5
30.5
CR crude incidence rate: (n/100,000 person years)
WSR: incidence standardised for age, making use of the Standard World Population (n/100,000
9
person years)
CRi: (Cumulative Risk): 0-74 years (%)
Table 1: Cancer incidence in Belgium (2004-2009)
In 2009 – the most recent incidence figures available in the Belgian Cancer Registry – 32,754 men
and 27,818 women were diagnosed with cancer (Table 1). With regard to the cumulative risk of
cancer, it appears that one in three men and one in four women in Belgium get cancer by the age of
75 (Table 1). Due to the ageing population a total of 39,559 men and 31,149 women are expected to
develop cancer in 2020. This is an increase of 21% and 12% respectively. An increase is also
expected in the number of second tumours: from 5,711 in 2009 to 6,676 in 2020. The differences in
cancer incidence between the different regions are small.
The ten most frequently occuring tumours by gender, Belgium 2009
Prostate (n=8,681)
Breast (n=9,596)
Colon (n=2,655)
Bronchus and lung (n=5,495)
Bronchus and lung (n=2,077)
Colon (n=2,930)
Bladder (n=1,716)
Corpus uteri (n=1,454)
Rectum (n=1,430)
Malignant melanoma (n=1,185)
Non-Hodgkin-lymphoma (n=940)
Non-Hodgkin-lymphoma (n=1,053)
Kidney (n=954)
Rectum (n=917)
Stomach (n=839)
Ovary (n=781)
Malignant melanoma (n=727)
Pancreas (n=648)
Pancreas (n=690)
30%
Thyroid gland (n=641)
20%
10%
0%
10%
20%
30%
40%
% of Total Incidence
Males
Females
Figure 1: The ten most frequent tumours by gender, Belgium 2009.
When we look at the different types of cancer, we see that prostate cancer is the most common
cancer in men (27% of all cancer diagnoses, Figure 1). The second and third most common cancers in
men are respectively lung cancer (17%) and colorectal cancer (9%). In women breast cancer (35%) is
the most common cancer, followed by colorectal cancer (9.5%) and lung cancer (8%). These 4 types
of cancer account for more than half of all newly diagnosed cancers in Belgium.
Compared to other European countries the incidence of cancer in Belgium is fairly high (Figure 2). For
men we are in second place, after France (Table 2); for women in third place, after Denmark and the
Netherlands (Table 3).
10
EU comparison of cancer incidence: all invasive cancers (2008)
France Denmark
Belgium The Netherlands
Norway
Denmark
Germany
Slovenia
Italy
Belgium
Norway
Iceland
United Kingdom
France
Spain
The Netherlands
Iceland
Poland
Italy
Germany
Sweden
Finland
United Kingdom Slovenia
Finland Spain
Sweden Poland
400
300
200
100
0
Females
100
200
300
400
WSR (n/100,000)
Males
Source: GLOBOCAN 2008
Figure 2: Comparison of cancer incidence in Europe: all invasive cancers, 2008
The risk of dying from cancer fell between 2004 and 2008 from 153.0/100,000 to 144.6/100,000 for
men and from 87.4/100,000 to 85.8/100,000 for women (expressed in WSR – World Standardized
Rate). Despite that, the number of cases of death has in fact risen, which has to do with the ageing of
the population.
11
Comparison of cancer incidence in Europe: top 5 for men
Intestine and
Head and
Prostate
Lung
rectum
neck
Bladder
Country
WSR
WSR
WSR
WSR
WSR
Belgium
100.5
57.1
44.3
21.1
15.7
Denmark
72.5
43.3
43.2
18.1
23.3
Finland
83.2
31.2
27.7
8.7
12.2
France
118.3
47.7
36.0
23.8
14.8
Germany
82.7
42.4
45.2
17.1
19.6
Iceland
112.1
31.6
30.9
8.0
19.7
Italy
58.4
45.4
45.2
16.7
20.1
Norway
104.1
35.3
43.0
10.0
20.2
Poland
44.3
71.2
33.1
22.8
19.2
Slovenia
62.8
54.7
46.5
21.8
11.1
Spain
57.2
53.3
39.7
26.5
27.7
Sweden
95.5
18.2
31.8
9.2
16.7
The Netherlands
67.7
47.4
45.6
13.3
14.1
United Kingdom
64.0
38.2
37.3
12.6
11.7
Europe
59.3
48.9
37.4
19.8
16.7
WSR: age-standardised incidence, making use of the Standard World Population (n/100,000
person years)
Red: country with the highest WSR
Green: country with the lowest WSR
Table 2: Comparison of cancer incidence in Europe: top 5 men
Comparison of cancer incidence in Europe: top 5 for women
Intestine
Malignant
Breast
and rectum
Lungs
Uterus
melanoma
Country
WSR
WSR
WSR
WSR
WSR
Belgium
109.2
29.5
17.5
12.9
12.7
Denmark
101.1
33.5
34.6
13.1
21.9
Finland
86.3
20.9
11.7
9.8
10.2
France
99.7
24.1
14.7
14.1
8.9
Germany
81.8
27.3
16.4
11.8
12.6
Iceland
95.5
23.4
29.4
12.4
12.9
Italy
86.3
29.9
11.4
10.9
8.7
Norway
73.5
34.0
24.7
17.3
16.5
Poland
48.9
18.4
18.6
13.2
3.3
Slovenia
64.9
26.2
16.2
15.3
15.2
Spain
61.0
22.9
7.7
10.9
5.6
Sweden
79.4
25.0
16.4
14.0
16.1
The Netherlands
98.5
32.3
27.2
12.2
18.8
United Kingdom
89.1
25.3
25.8
13.3
13.2
Europe
66.7
23.9
13.4
12.8
7.8
WSR: age-standardised incidence, making use of the Standard World Population (n/100,000
person years)
12
Red: country with the highest WSR
Green: country with the lowest WSR
Table 3: Comparison cancer incidence in Europe: top 5 women
The 10 most frequent causes of death from cancer by sex, Belgium 2008
Lung (n=4,943)
Breast (n=2,329)
Colorectal (n=1,555)
Lung (n=1,544)
Prostate (n=1,410)
Colorectal (n=1,375)
Pancreas (n=753)
Pancreas (n=730)
Head and neck (n=581)
Ovary (n=653)
Bladder (n=575)
Leukaemia (n=459)
Esophagus (n=509)
Non-Hodgkin-lymphoma (n=324)
Leukaemia (n=509)
Liver (n=309)
Stomach (n=484)
Stomach (n=305)
Liver (n=444)
40%
Brain (n=265)
30%
20%
10%
0%
Males
10%
20%
30%
40%
Females
Figure 3: The 10 most common causes of death from cancer by gender, 2008.
Lung cancer is associated with high mortality. A third of all deaths in men can be ascribed to lung
cancer (Figure 3). In women lung cancer is the second cause of death by cancer. Because lung
cancer is linked to lifestyle, and in particular to smoking, this percentage should fall significantly if we
change our behaviour.
In men the cancer with the second highest risk of a fatal outcome is colorectal cancer and the third is
prostate cancer. In women the three most important cancers as regards mortality are breast cancer,
lung cancer and colorectal cancer.
Compared to the rest of Europe with regard to mortality, Belgium occupies fifth place for men and
ninth place for women (Figure 4).
13
Comparison of cancer mortality: all invasive cancers (2008)
Poland
Slovenia
Spain
Denmark
Belgium
The Netherlands
France
Italy
United Kingdom
Germany
Norway
Sweden
Finland
Iceland
200
150
100
50
Denmark
The Netherlands
United Kingdom
Poland
Slovenia
Iceland
Norway
Sweden
Belgium
Germany
Italy
France
Finland
Spain
0
Females
50
100
150
WSR (n/100,000)
200
Males
Figure 4: Comparison of cancer mortality rates in Europe: all invasive cancers (2008)
1
When we look at the relative survival we see that compared to other European countries Belgium
stands in fifth place for men, after Iceland, Sweden, Finland and Norway, and in third place for women,
after France and Finland (based on data from EUROCARE 4; data from Flanders 1998-2001).
In Figures 5 and 6 the 5-year survival is given for Belgium (in general and for some specific tumours).
Males - 5-year relative survival
100
90
80
Percentage (%)
70
60
50
40
30
20
10
0
All cancers
Breast
Colon-rectum
Flemish Region, 1997-2001
Lung
Prostate
Belgium, 2004-2008
1
Relative survival indicates the ratio of the observed survival in a group of cancer patients compared to the survival that one
would expect in a group of people who have the same lifestyle as the cancer patients at the time of the diagnosis. The relative
survival is an approximation of the disease-specific survival.
14
Figure 5: 5-year relative survival in men, Belgium. Children (0-14 y) have been excluded from this data (year
of diagnosis 2004-2008). Since the cancer types surveyed are not important in this age group, and persons aged
0-14 years contribute only 0.7% of the total number of cancers, we can regard the effect as insignificant.
Females - 5-year relative survival
100
90
Percentage (%)
80
70
60
50
40
30
20
10
0
All cancers
Breast
Flemish Region, 1997-2001
Colon-rectum
Lung
Belgium, 2004-2008
Figure 6: 5-year survival in women, Belgium. Children (0-14 y) have been excluded from this data (years of
diagnosis 2004-2008). Since the types of cancer surveyed are not important in this age group, and persons aged
0-14 years contribute only 0.7% of the total number of cancers, we can regard the effect as insignificant.
15
OUR HEALTH: A PRIORITY
Belgium is a federal state with a parliamentary democracy. There are three levels of government – the
federal government, the federated entities (three regions and three communities), and local
government (province and local council administrations).
Health falls under the responsibility of both the federal authorities and the federated entities
(communities and regions). To foster collaboration between the federal authorities and the federated
entities, the Interministerial Public Health Conference meets regularly (Table 4). Many intercabinet
work groups, including the intercabinet work group “Cancer”, operate under the auspices of this
Interministerial Public Health Conference. Topics that affect all political levels can be discussed in this
“Cancer” intercabinet work group. In this way collaboration is encouraged.
In the Coalition Agreement of 1 December 2011 a number of shifts were described in this assignment
of competencies. These changes have not yet been included in Table 4. A more detailed discussion of
health care organisation in Belgium can be found in Appendix A.
Federal government
Federated entities
Minister of Public Health and Social Affairs
Ministers of the Communities and the regions
Disease and disability insurance
Health promotion and prevention: advice on a
healthy diet together with activities and
services with regard to prevention, with the
exception of national measures regarding
prophylaxis.
Families policy, including all standards for help
and assistance for families and children
Recognition standards insofar as they do not
concern the competence of the federal
government
Recognition and financing of the day centres
for palliative care
Financing of the organic operation of hospitals
Basic regulations regarding financing of
infrastructure and heavy medical equipment
Standards for the accreditation and recognition
of health professions.
Registration and licences for marketing
pharmaceutical products
Interministerial conference
16
2
Table 4: Division of the competencies regarding health care and public health in Belgium
The Belgian health care system is easily accessible. Further improvements with regard to the efficacy
of preventive and customised care, and with regard to sustainability, can still improve the performance
of the system as a whole. At present a project is underway to evaluate the performance of the Belgian
health care system (study KCE 2011-40 (HRS)). This project is a continuation of the first
measurement of the performance of the Belgian health care system that was published in 2010 [4].
The ongoing study serves to confirm the pertinence of the indicators identified. It will also fill the gaps
with regard to patient orientation, continuity of care and the approach to particular patient groups. At
the same time specific attention is being given to health promotion with its specific indicators and
interactions with other areas. The transversal concept of ‘fairness’ is also the object of a specific
analysis. Finally it will also look into whether global performance can be measured. More information
about this continuing study can be found on the website of the Federal Knowledge Centre, KCE
(www.kce.fgov.be).
CANCER AND PUBLIC HEALTH
Cancer is one of the challenges for public health. In 2008 cancer was the second largest cause of
death in Belgium (27.02%) (see Table 5).
A number of generic problems pertain to all chronic conditions, but at the same time each of these
conditions – and cancer in particular – poses a number of specific challenges. The Cancer Plan is also
examining these generic problems. A number of transversal measures in the Cancer Plan are applied,
in a broader scope, including chronic diseases. For completeness, it must be noted that not all types
of cancer can be classified as chronic disease.
2
Based on extract BWHI 15/08/1980
17
Mortality in Belgium in 2008 by Cause and Age Group
Total Ranking < 5y 5-9y 10-14y 15-19y 20-24y 25-29y 30-34y 35-39y 40-44y 45-49y 50-54y 55-59y 60-64y 65-69y 70-74y 75-79y 80-84y 85-89y 90-94y 95-99y 100+y Unknown
All Causes
103.760
573
55
59
241
352
430
468
754
1.249
2.055
3.160
4.421
5.719
6.358
9.462
8
11
2
1
5
4
8
8
16
30
44
68
67
106
135
187
348
499
28.114
2
19
16
8
30
24
48
77
173
322
730
1.299
1.982
2.646
2.894
3.688
4.862
2.741
7
21
8
2
5
2
8
3
5
22
35
56
88
124
138
226
8.290
5
22
2
8
11
16
28
29
47
77
117
154
215
243
281
Diseases of the circulatory system (I00-I99)
33.142
1
6
3
4
17
15
23
41
72
215
357
612
886
1.307
Diseases of the respiratory system (J00-J99)
11.416
3
6
2
1
2
7
5
5
18
36
66
135
273
External Causes of morbidity and mortality
(V01-Y98)
6.625
6
48
17
33
153
268
282
267
373
424
464
440
Other Causes of mortality (Other Codes)
11.139
4
440
5
2
18
16
29
38
47
123
242
396
Certain infectious and parasitic diseases (A00B99)
2.293
Neoplasms (C00-D48)
Endocrine, nutrional and metabolic diseases
(E00-E90)
Psychological and neurological diseases (F00G99)
15.139 19.918 19.102
9.320
4.206
716
3
456
205
80
13
-
4.652
3.218
1.029
361
36
-
403
598
537
307
130
23
-
562
1.236
1.818
1.969
1.013
401
41
-
1.521
2.681
4.707
7.162
7.606
3.853
1.750
304
-
413
581
992
1.759
2.556
2.511
1.300
630
118
-
403
316
316
372
501
691
706
374
148
27
2
507
564
492
755
1.323
1.943
2.098
1.239
705
154
1
Source: Directorate General Statistics and Economic Information - Demographics Service.
Table 5: Mortality in Belgium in 2008 by cause of death and age group. Source: Directorate General for Statistics and Economic Information – Demographics Department
18
EVALUATION OF THE CANCER PLAN
STRUCTURE OF THE EVALUATION OF THE CANCER PLAN
The present document evaluates the impact of implementing the Cancer Plan 2008-2010 at length
and tries to answer the following questions:
Have the objectives in the Cancer Plan been reached?
Have the specific objectives of the actions been reached?
What is the situation in which particular actions have been identified?
What is the impact of implementing an action as defined in the Cancer Plan?
3
The evaluation first gives a short description of each action and/or the measures in the Cancer Plan
2008-2010 and then discusses the actions point by point. For an exact description of the actions,
please see the original Cancer Plan 2008-2010 and the progress report presented by Minister
4
Onkelinx .
In evaluating the Cancer Plan 2008-2010, we take into account a wide range of actions and measures.
Some of the measures can be handled almost mathematically, while others encourage innovation or
identify and/or disseminate best practices, and thus are not so easy to chart.
For all the above-mentioned reasons, the evaluation is divided into:
An evaluation of the implementation with a statement of the actual figures.
Background information, including the scientific literature, expectations and/or the
importance for (public) health (care).
A qualitative evaluation with a statement of the results obtained from the LimeSurvey.
A discussion.
A conclusion per action.
After the statement of the results, a general conclusion is formulated with recommendations for the
future.
In the evaluation we thus investigate on the one hand the impact of implementing a specific measure,
and on the other hand the effect and importance of the Cancer Plan according to the patients as well
as those involved in the field of cancer. After all, the objective with the Cancer Plan is to improve the
way in which patients are treated and supported, among other things. In order to meet these two
different objectives, we employ both a qualitative and a quantitative approach.
3
Since the implementation of the various actions took place at various points in time, we can only give a null measurement of
the 2011 results in particular cases. However, this null measurement does ensure further monitoring.
4
All documents can be accessed via http://www.laurette-onkelinx.be/articles_docs
19
The quantitative approach consists of two aspects:
An evaluation of the implementation of the actions and measures taken in the Cancer
Plan 2008-2010.
An evaluation of the impact on (public) health and health care of the actions and
measures taken in the Cancer Plan 2008-2010.
To enable quantitative evaluation, indicators were listed on the basis of a review of the scientific
literature and the objectives of the specific measures. The following documents describe the complete
procedure:
Identification of a methodology [5]
Literature review [6]
Feasibility analysis of the indicators identified in preparation for the evaluation of the
Cancer Plan 2008-2010 [7]
Thereafter the indicators were calculated and processed in the report Results 2011 [8]. This report
contains the results up to and including the year 2011 and presents an overview of the results of the
indicators. In addition, it recounts the already existing scientific expertise in the field with regard to
specific measures taken in the Cancer Plan 2008-2010, for example the KCE reports. In this way –
where relevant – a theoretical context is created for each action.
The qualitative evaluation was conducted using a survey, by means of an electronic questionnaire
(LimeSurvey), of patient organisations and representatives in the field who were already involved in
the operation of the Cancer Centre, via the Advisory Committee or the Coordination Platform.
LIMITATIONS OF THE CANCER PLAN 2008-2010 EVALUATION
This evaluation of the cancer plan has its shortcomings. We will outline the most important ones. As
the Cancer Plan was launched in March 2008 and because a great many measures have been
implemented over the last few years, evaluation of the impact of implementation of the measures as
far back as 2011 is not straightforward. We have not yet been able to gather some of the data, since
some actions have not yet been implemented for long enough. To deal with this, it was decided to
divide the indicators into three types:
Indicators that reflect the impact of an action and/or measure in the field.
Indicators that reflect the context from which an action and/ or measure has grown.
Indicators that give a null measurement of a specific action and/or a specific measure.
By using indicators, we wanted to investigate as accurately as possible the effects of the Cancer Plan
in the field. Some of the indicators are quite pragmatic and reflect the effects of implementing
particular measures, but in some cases they currently lack a scientific foundation. Regular evaluation
will enable us to determine the added value of these ‘new’ pragmatic indicators. Other indicators say
something at the population level, and are therefore by definition less connected to a specific action
20
and/or a specific measure. There is no causal link between these population indicators and specific
actions and measures.
For the qualitative survey we drew on representatives in the field who were already involved in the
operation of the Cancer Centre via the Advisory Committee and the Coordination Platform. There are
however still a good number of representatives in the field. The results can therefore not be
generalised.
The evaluation of the Cancer Plan is limited to the actions and measures taken in the context of the
Cancer Plan 2008-2010. No extrapolation has been made with regard to the impact on health care
and public health.
21
RESULTS 2011: THEORETICAL BACKGROUND TO THE IMPLEMENTATION OF THE CANCER
PLAN 2008-2011
IMPLEMENTATION OF THE CANCER PLAN
In its original form the Cancer Plan 2008-2010 consisted of 32 actions and 61 measures. Since the
launch of the Cancer Plan 2008-2010 13 measures have been added.
Of all 74 measures, 44 (60%) have been implemented and 30 (40%) are in the process of being
implemented or prepared. In the course of implementing the Cancer Plan a number of measures have
been modified or developed further before being put into practice. An example of this is measure
A6M2 – training physicians with regard to the prevention of health risks – which has been re-shaped
into e-learning modules. Another measure (A15M2) – reimbursement of medicines for breast cancer
for men with breast cancer – has been included in the Special Solidarity Fund.
Progress is regularly communicated with reference to the content, people who are responsible for the
measures, budgets, and potential difficulties for specific actions and measures. This report is
presented by Minister Onkelinx.
IMPACT EXPERIENCED IN THE FIELD (via the LimeSurvey)
The qualitative evaluation with LimeSurvey examined how players in the field and patients (via the
patient organisations) experienced the Cancer Plan 2008-2010. The selection was made based on
their involvement in the fight against cancer. Sixty-four (64) participants from the Cancer Centre’s
Coordination Platform and Advisory Committee were contacted. Together they represent 40 different
institutions involved in the fight against cancer in Belgium.
The Advisory Committee seeks to steer the Cancer Centre by:
Approving the Cancer Centre’s annual action plans.
Evaluating the annual reports on the Cancer Centre’s activities.
Encouraging the setting of new priorities and the development of new projects.
Approving the composition, mission and recommendations of the Coordination
Platform.
The Cancer Centre’s Coordination Platform is a technical advisory body. Its remit is to suggest priority
measures based on an inventory of requirements for the fight against cancer in Belgium and based on
scientific evidence.
22
We decided to write to the Advisory Committee and the Coordination Platform, since both supporting
bodies have a balanced composition with regard to national language and expertise.
In addition we invited patient organisations to report their experience with the Cancer Plan. One
hundred and eleven (111) representatives of 66 different patient organisations were also invited to
give their opinion.
The description and results of the qualitative evaluation can be found in full in Qualitative evaluation
using LimeSurvey [9;10].
Of the 40 institutions contacted, 30 completed the questionnaire and returned it, which represents 37
questionnaires completed individually by members of the CP and BC and a response rate of 75%. A
lower response was obtained from the institutions in the care sector, mainly due to the lack of
participation by the representatives of hospitals and palliative care. In this connection it should be
noted that input from the scientific institutions was mainly provided by doctors at university hospitals.
Participants report an average of 10 years’ experience with policy and policy support work and have
been involved in the Cancer Plan for an average of 4 years.
Of the 66 patient organisations, associations and self-help groups contacted, 21 organisations
completed their questionnaire, which represents a response rate of 32% (13 Flemish and 8 Walloon
associations). A great many did not fill them in completely, so 17 questionnaires were incomplete. The
main reason for not completing the questionnaire was the feeling of knowing too little about the actions
and measures within the Cancer Plan to formulate a specific answer or to give an opinion.
Incomplete questionnaires were not included for further analysis.
It appears from the pattern of response from the patient organisations that more than half of the
patients or patient organisations were (still) not aware of the contents of the actions and measures in
the Cancer Plan 2008-2010. Therefore, a great many patients and/or patient organisations are not
aware of the possible added value of particular actions in daily life.
Three questions were posed about each action and measure:
1. To what extent does this measure match your institution’s vision/mission?
2. To what extent do you agree with the way in which this measure has been tackled in
practice (agreement)?
3. How highly would you rate the ‘success’ of the implementation?
Participants could answer on a 7-point Likert scale ranging from 1 (very little) to 7 (very highly). Their
reasons for the scoring on ‘success’ could be explained further in an adjoining open question.
In the report Qualitative evaluation using LimeSurvey an overview is given of the results together with
the most frequent positive and negative remarks [9;10]. A summary is presented here.
23
From this evaluation we can deduce that the participants positively evaluated the identified actions
and/or measures as well as the manner of implementation. Two-thirds of the measures taken were
regarded as successful by both those working in the field and patient organisations.
The opinions of the members of the Advisory Committee, the Coordination Platform and the contacted
patient organisations were comparable. The impact of the actions and measures taken in the Cancer
Plan 2008-2010 were experienced as clearly discernible and visible in the field. The launch of the
Cancer Plan was regarded as particularly positive and there was unanimity that the Cancer Plan must
be continued. The plan has ensured an improvement or extension of cancer care in all its facets,
ranging from prevention through palliative care to research. Attention to the quality of cancer care and
to topics not previously discussed were designated as significant strengths.
The participants discerned a number of noticeable strengths in the Cancer Plan 2008-2010. They
mentioned the further extension of high-quality cancer care by the appointment of data managers, pilot
projects, improved reimbursement for the patients, etc. Other aspects were pointed out were attention
to psychosocial support and communication between doctors and patients as well as some associated
measures, such as the required training courses and the way in which the Cancer Centre acts as
facilitator. In the future annual monitoring and evaluation of the actions and measures of the Cancer
Plan are expected.
In addition to these strengths, points that need attention have also been identified. It was emphasised
by the vast majority of the participants that in future more opportunities to monitor and evaluate the
Cancer Plan must be identified.
The recommendations that have been identified by the participants in this qualitative evaluation are:
To build further on the Cancer Plan 2008-2010;
To invest in publicising the actions and measures of the Cancer Plan;
To guarantee the best possible individualised care;
To extend the MOC further;
To continue to invest in pilot projects;
To guarantee annual monitoring and evaluation by the Cancer Centre;
To extend structural collaboration with the patient organisations;
To ensure that information is exchanged at all levels and between all players in the
field.
For a complete statement of the results of this qualitative evaluation, we refer to Qualitative evaluation
using LimeSurvey [9;10].
24
RESULTS
DOMAIN 1: PREVENTION AND DETECTION
ACTION 1: REIMBURSEMENT OF CONSULTATIONS TO QUIT SMOKING
This action consists of three measures:
1. Reimbursement of consultations with a smoking cessation specialist or a medical doctor (in
effect since 1 October 2009). A maximum of 8 sessions over a period of 24 months are
reimbursed. (In the original Cancer Plan this measure was divided into the reimbursement of a
first session and the reimbursement of a maximum of seven follow-up sessions.)
2. Reinforcement of the team that monitors statutory compliance (3 inspectors taken on in 2008).
3. Financing of the training of smoking cessation specialists by FARES and VRGT (in effect
since September 2009).
Objectives
5
This action is intended to lead to:
1. A drop in the number of smokers.
2. A drop in the number of conditions related to smoking.
3. The highest possible compliance with the legislation.
Evaluation of the implementation
Since the first measure came into effect, more and more people are consulting a smoking cessation
specialist or a medical doctor for help to quit smoking (Figure 7). Between October and December
2009 763 smokers consulted a smoking cessation specialist for the first time; in 2010 the figure was
9,262 over the whole year, and in 2011 it was 12,500. Taking into account the number of follow-up
6
sessions, we see that each smoker has an average of 2.7 sessions . A recent meta-analysis of the
literature reveals that the provision of follow-up sessions has a small but significant positive effect on
stopping smoking, compared with a single session with a medical doctor. The effect of intensive
monitoring could be greater, however, if it were only provided for people at high risk [11].
No data is presently available for examining whether these people actually stopped smoking. Nor can
we examine whether these persons used other supporting agents (medications, etc.) or to which
extent.
Given that 25% of the Belgian population smokes (according to the figures of the Belgian Health
7
Survey) – that means approximately 2,750,000 Belgians – then fewer than 1% of the smokers made
use of the above-mentioned measure during the period October 2009 through June 2011.
5
These objectives were derived from the introductory text of each action described in the National Cancer Plan 2008-2010 (see
also Evaluation of the Cancer Plan 2008-2010: Identification of a Methodology)
Information about the number of attempts made to stop smoking by Belgian smokers can be found in the Belgian Health
Survey 2008.
7
Pregnant women not included.
6
25
Total number of
consultations
25000
20000
First sessions
Follow-up sessions
15000
10000
5000
0
2009 (Oct-Dec)
2010
2011
Year
Figure 7: Number of consultations per year with a smoking cessation specialist or a medical doctor. First
sessions (orange) compared with follow-up sessions (green). Notice that the 2009 figures were recorded from
October to December (Source: NIHDI, figures processed by the Cancer Centre).
Pregnant women benefit from a higher reimbursement tariff than not-pregnant smokers for a
consultation with a smoking cessation specialist or medical doctor. The number of pregnant women
who request support from a smoking cessation specialist or a medical doctor has likewise been rising
since the measure was introduced.
To support the care providers who help people stop smoking, the Cancer Plan also provides training to
become a smoking cessation specialist (Measure 3). Organising this course has been assigned to the
Fund for Respiratory Diseases (FARES) in Wallonia and to the Flemish association for Respiratory
Health Care and Tuberculosis Control (VRGT) in Flanders. During this one-year training course the
participants acquire the necessary skills for mentoring and supporting smokers who want to stop.
Table 6 shows the number of participants for two successive years of training in both institutions. The
Cancer Plan only started financing these training courses in September 2009.
FARES
2009-2010
2010-2011
TOTAL
55
56
111
VRGT
24
59
83
TOTAL
79
115
194
Table 6: Number of participants in the smoking cessation course organised by FARES and the VRGT, per
year for which funding was granted.
At present there are 194 trained smoking cessation specialists in Belgium. In addition to smoking
cessation specialists, medical doctors can offer support with stopping smoking. At present there is no
information available about the difference between the support for smoking cessation offered by
smoking cessation specialists and medical doctors.
The second measure reinforces the team that performs targeted checks on compliance with tobacco
legislation. The inspectors of the FPS Public Health (Directorate General Animals, Plants and Nutrition
26
of the FPS Public Health, Safety of the Food Chain and the Environment) and the FASFC (Federal
Agency for the Safety of the Food Chain) are jointly responsible for performing these checks.
The FASFC is responsible for checking compliance with the smoking ban in restaurants, while the
FPS Public Health checks compliance with the smoking ban in cafés. Table 7 shows the number of
checks performed by the FPS Public Health and FASFC inspectors. Between January and June 2011
the inspectors recorded 52.3% non-compliance incidence in cafés. Since the introduction of an
unequivocal complete smoking ban in cafés and restaurants on 1 July 2011, only 10% noncompliance incidence was recorded between July and December 2011. For restaurants the legislation
has not changed, and a similar infringement percentage was determined for the first and second half
of 2011.
YEARS
FPS
FASFC
2006
18,300
2,535
2007
18,000
11,979
2008
18,600
5,290
2009
19,800
11,738
2010
25,500
12,769
2011
24,450
10,381
Table 7: Overview of the checks on compliance with the tobacco legislation by the FPS and the FASFC.
The checks performed by the inspectors of the FASFC relate to restaurants and cafés. (Sources:
www.health.belgium.be/eportal/Myhealth/Healthylife/Tobacco/Inspection/index, personal communication with Paul
Van den Meerssche (FPS Public Health, February 2012), and annual reports of the FASFC: www.favv.be/annual
reports).
Background information
The causal link between smoking and cancer has long been scientifically proven. Exposure to tobacco
in all its forms is the most significant risk factor for cancer and is responsible world-wide for 31% and
6% of all deaths due to cancer in middle-aged men and women, respectively [12]. Smoking is
recognised as the most important cause of lung cancer. Moreover, non-smokers run a distinct risk
from passive smoking. Exposure to passive tobacco smoke is classified by the International Agency
for Research on Cancer (IARC) as a type I carcinogen (cancer-inducing substance) in human beings
[13].
Based on information from the Belgian Health Questionnaire in 2008, the percentage of smokers in
Belgium has declined from 30% (1997) to 29% (2001), 28% (2004) and most recently 25% in 2008
[14;15].
With regard to the smoking behaviour of pregnant women, the trends are less positive. A faster drop in
smoking rates was noted among the highly educated groups as compared to the lower educated ones.
The prevalence of smoking actually increased among women with a low level of education [16].
27
According to the data from the Belgian Cancer Registry (BCR), there has been a significant decrease
in lung cancer incidence in males in the Flemish Region from 1999 to 2009. However, in females the
incidence showed a significant increase, especially among those aged 50 years and older.
Qualitative evaluation
8
It appears from the qualitative evaluation that the participants awarded an average score to the
measures that were originally included in the Cancer Plan 2008-2010. The lack of awareness of the
impact of the first measure by the people who use these measures has been given as the most
important remark (Table 8).
Average
Median
SD
n (%)
BC and CP
Patients
BC and CP
Patients
BC and CP
Patients
BC and CP
Patients
Measure 1
3.9
4.0
4.0
4.0
1.4
1.1
21 (81%)
12 (57%)
Measure 2
3.9
3.3
4.0
3.0
1.2
1.3
16 (62%)
4
Measure 3
5.1
4.5
5.0
4.0
1.4
1.1
17 (65%)
13
SD = standard deviation (measure of the spread of the data)
BC = The Cancer Centre’s Advisory Committee
CP = The Cancer Centre’s Coordination Platform
n = number of respondents
% = percentage respondents with respect to the number of institutions/organisations contacted. A
percentage has not been calculated for the patient organisations, since they often only ;provide
answers about actions that relate to their area (the number of patient organisations contacted was 66).
Table 8: Scoring of the ‘success’ of action 1 (maximum score = 7).
Discussion
It is too early to evaluate whether the objectives have been attained. However, this interim evaluation
does give us a number of elements for each of the specific measures taken. These measures are also
related to the WHO recommendations (cf. the implementation of the WHO Framework Convention on
Tobacco Control in Belgium on 30/01/2006). The measures taken by the federated entities in the
context of a smoking ban will not be discussed here.
The number of consultations with smoking cessation specialists or medical doctors for help to quit
smoking is rising, even though only a fraction of the target group is being reached. Specific target
groups, such as pregnant women and young smokers, require more attention.
The effectiveness of this measure cannot be gauged at this point in time because no additional
information is available about the smoking behaviour of people after they have consulted a smoking
cessation specialist or a medical doctor and whether they used or are using other supporting agents.
This should be investigated in the future.
The intensification of the checks on compliance with tobacco legislation is regarded as very
successful. The monitoring of strict implementation of the existing legislation deserves continuing
8
The qualitative evaluation gives an impression of the participants’ remarks.
28
attention. Since the introduction of the general smoking ban in public eating establishments on 1 July
2011, in general fewer infringements have been recorded during regular checks. In the period
November-December 2011 the number of infringements was nevertheless higher than in the period
September-October 2011. This can be ascribed to an increase in the number of notifications to the
FPS Public Health contact centre at the end of 2011, combined with more active monitoring of these
Number of calls
reports (see Figure 8).
180
notification
160
information request
140
120
100
80
60
40
20
20
11
De
c
20
11
No
v
20
11
O
ct
20
11
Se
p
20
11
Au
g
Ju
l2
01
1
0
Figure 8: Number of calls received by the FPS Public Health Contact Centre about the total smoking ban,
since its introduction on 1 July 2011 to the end of 2011. A distinction is made between a notification (i.e. a
request for inspection because an infringement has been identified) and a request for information (i.e. a request
for clarification of the legislation).
Each year figures are published about smoking behaviour in Belgium. Various organisations publish
these figures, e.g. the Foundation against Cancer, OIVO/CRIOC, SIPH, etc. The way in which the
different institutions specify the number of smokers differs according to the institution and/or
organisation. This does not make comparison and monitoring easy.
Findings
1. Two years after the introduction of reimbursement for consultations with a smoking cessation
specialist or a medical doctor, this payment is used by fewer than 1% of smokers (pregnant
women not included).
2. The fixed sum is higher for pregnant women than for others; but women should stop smoking
before they become pregnant.
3. Compliance with the legislation deserves continuing attention.
4. The number of men who smoke has fallen.
5. The number of women who smoke has risen.
6. The number of pregnant women who smoke has fallen.
7. Different institutes have investigated the percentage of smokers and quitters in different ways.
The number of people who stop smoking due to measures other than reimbursement must
29
also be included in the picture in following evaluations (for example, via the Health Interview
Survey).
8. Special attention should be given to the social inequalities in smoking behaviour.
30
ACTION 2: DETECTION AND COUNSELLING OF PEOPLE AT RISK WITH A GENETIC
PREDISPOSITION FOR DEVELOPING CANCER
This action consists of three measures.
The first two measures are:
1. The reimbursement of certain new genetic tests for investigating the predisposition to
developing cancer (in preparation).
2. A specific re-evaluation of the fees charged for genetic consultations by a geneticist (in
preparation).
The third measure arises from discussions and proposals in the context of the work done by the Fund
for Rare Diseases and Orphan Drugs. This measure, i.e. the reimbursement of DNA tests sent abroad,
was added in 2011 and will be included in the draft agreement when genetic consultations are reexamined.
Objectives
9
This action is intended to lead to better access to the best possible care during genetic counselling.
Measure 2 has been adjusted and re-shaped into a high-quality care environment that is necessary if
patients are to be guided as well as possible before, during and after genetic counselling.
All measures were still in preparation at the time of the evaluation, so an evaluation is not yet on the
agenda.
This action is intended to lead to the optimisation of the genetic testing of at-risk people with a genetic
predisposition to developing cancer. This is because for certain types of cancer, as for other
conditions, there is a hereditary predisposition. Five (5) to ten (10) per cent of all cancers can be
ascribed to an increased risk of cancer due to genetic predisposition. When we look at the number of
new diagnoses of cancer in 2009, this corresponds to about 3,040 to 6,075 people. Breast cancer,
prostate cancer, colorectal cancer and ovarian cancer are the most common cancers linked to a
hereditary predisposition.
Another objective of this action is a change in the way the genetic centres are run, so that people can
have their genetic test performed in a high-quality care environment. At the same time, attention is
being given to the impact of genetic tests on the individual. Regardless of the disorder, genetic tests
necessarily involve stress, even for people with a negative result (i.e. they don’t have a hereditary
predisposition). This stress can even persist for years [17]. Researchers have found that unease about
cancer mostly occurred in the period after the participants had been informed about their level of risk.
This anxiety also arises in people who have a low risk of hereditary predisposition, so we must be able
9
These objectives were derived from the introductory text for each action described in the National Cancer Plan 2008-2010 (see
also Evaluation of the Cancer Plan 2008-2010: Identification of a Methodology).
31
to provide suitable support and follow-up. To get an idea of the number of people who might contact
these genetic centres, we take the number of adults with a diagnosis of cancer – breast cancer,
colorectal cancer or ovarian cancer – before the age of 50. According to figures from the Belgian
Cancer Registry, this number was approximately 17,000 (diagnosed in Flanders between 1999 and
2009). In 5 to 10% of the cases a hereditary form of cancer could be involved.
At the same time people with a genetic predisposition have a greater risk of developing a second
tumour after the first (primary) cancer has been cured. A second cancer can also develop for many
other reasons, such as a late adverse effect of the treatment of the first cancer. Data from the Belgian
Cancer Registry (results of the 2011 report) indicate that in the period 1999-2009, about 5% of
patients in whom a primary breast, colorectal or ovarian cancer was detected developed a second
tumour before the age of 60 years. The average time interval between developing the first and second
tumours was 2.5 years. These people are also eligible for investigation of a possible genetic
predisposition.
10
It appears from the results of the qualitative survey that there are high expectations for the further
development of this measure, both from the perspective of the patient and in order to facilitate
research into genetic factors linked to cancer and other conditions. These high expectations are
revealed in the high score for the “success” question regarding measures that have not yet come into
effect (Table 9).
Average
Median
SD
n (%)
BC and CP
Patients
BC and CP
Patients
BC and CP
Patients
BC and CP
Patients
Measure 1
4.8
3.6
5.0
3.0
1.5
1.4
18 (69%)
11
Measure 2
4.7
3.0
4.5
3.0
1.7
2.0
11 (42%)
3
BC = the Cancer Centre’s Advisory Committee
CP = the Cancer Centre’s Coordination Platform
percentage has not been calculated for the patient organisations, since they often only provide
Table 9: Scoring on the question ‘success’ of action 2 (maximum score = 7)
Discussion
Research into genetic predisposition is an important component of cancer care. It implies that families
with a family history of cancer can then opt to look into preventive interventions before the cancer can
develop. This action is still to be implemented; so it is too early to evaluate the intended objective.
10
32
Findings
1. The preparation of this action is in the final phase.
2. Preparations are being made for a College of Genetics. The College of Genetics will formulate
evidence-based clinical guidelines. In addition, quality indicators and evaluation criteria for the
genetic centres will be developed in order to evaluate the quality of care.
33
ACTION 3: EXTENSION OF THE AGE RANGE FOR VACCINATION AGAINST HUMAN
PAPILLOMA VIRUS FOR GIRLS FROM 12 TO 18 YEARS
This action consists on the one hand of extending the reimbursement of the human papillomavirus
(HPV) vaccine for girls from 12 to 18 years of age (as a consequence the cost of the vaccine for girls
in the target group has fallen from €412 to €33, or even €11 per dose; measure 1, in effect since 1
December 2008) and on the other hand of introducing an organised HPV vaccination programme
(measure 2). The latter measure was introduced in 2010 by the Flemish Community and in 2011 by
the French and German-speaking Communities.
Objectives
11
This action is intended to result in:
1. A drop in the number of HPV infections (mainly type 16 and 18).
2. A lower incidence of cervical cancer.
3. Fewer deaths from cervical cancer.
Concerning measure 1, figures from Farmanet (the NIHDI’s database with data about reimbursed
medical products which are supplied via community pharmacies) show that in the period November
2007 to December 2010 45% of the target group (12 to 18-year-olds) received at least one of the three
doses of the HPV vaccine.
All Communities have introduced an HPV vaccination programme (measure 2). The Flemish
Community started its programme in September 2010. Girls in the first year of secondary school, or
born in 1998, have been vaccinated by the Centre for Student Guidance (CLB), general practitioners
(GPs) or paediatricians. All registration data on HPV vaccination is stored centrally in Vaccinnet (an
ordering and distribution system for vaccines, managed by the Flemish authority, which is linked to a
registration system for vaccinations). Approximately 90% of the vaccinations were performed by the
CLB; the remaining 10% were done by GPs and paediatricians. A coverage of approximately 85% has
been achieved in the first year of the HPV vaccination programme. Analysis of the vaccination data
recorded by Vaccinnet also indicated that about 80% of the target group received 2 doses of HPV
vaccine via the CLBs, while about 75% received a third dose (Table 10). Since approximately 90% of
the vaccines supplied were ordered by the CLBs and some of the administered third doses have not
yet been registered, the actual coverage may even be 5-8% higher. The relative number of
vaccinations recorded for girls born in 1996 (and part of 1997) is clearly higher than for girls born in
1998. Presumably the reason for this is that some of the girls are already further on than the first year
of secondary education, but because there is no link to the school year in the database, this cannot be
investigated. The data for the girls born in 1998 perhaps give the best approximation to the
percentage of girls in the target group who have been vaccinated.
11
34
Year of birth
Target group
Vaccinations
HPV 1
HPV 2
HPV 3
CLB - HPV 1
CLB - HPV 2
CLB - HPV 3
1996
612 (1.7%)
Number
1.588
1.326
1.086
482
441
372
%
259.5%
216.7%
177.5%
78.8%
72.1%
60.8%
1997
5.677 (16.2%)
Number
%
5.567
98.1%
5.236
92.2%
4.555
80.2%
4.273
75.3%
4.176
73.6%
3.749
66.0%
1998
28.375 (80.8%)
Number
%
24.209
85.3%
23.886
84.2%
22.252
78.4%
23.487
82.8%
23.269
82.0%
21.839
77.0%
Table 10: The number of vaccinations per birth cohort as registered by Vaccinnet, starting 1 September
2010, for the first (HPV1), second (HPV2) and third (HPV3) dose. The number of HPV1, HPV2 and HPV3
vaccinations given by the CLBs is shown separately. The data for HPV3 is still incomplete. Source:
http://www.care-and-health.be/HPV) (period September 2010 to April 2011 incl.).
Compared to a number of other countries where HPV vaccination already forms part of the vaccination
programme, this can be regarded as a very good result. For example, the Netherlands achieved a
coverage of 52% according to a vaccination study by the Dutch National Institute for Public Health and
Environment. For the same target group, England reached almost the same vaccination coverage, i.e.
84.3%, 82.3% and 76.4% for vaccine doses 1, 2 and 3 respectively. According to the VENICE 2
report, the coverage of HPV vaccination in Portugal among 13-year-old girls was 81%.
In the French Community HPV vaccination has been included in the ongoing vaccination programme
since the 2011-2012 school year. At present there is no systematic registration scheme. The Germanspeaking Community is likewise incorporating HPV vaccination in the vaccination programme, in
collaboration with the French Community. No results are available yet from the vaccination programme
organised by the French and German-speaking Communities.
There is a large geographical variation regarding cervical cancer in Europe (Figure 9). Cervical cancer
is more common in the eastern Europe than in the north-west and south of Europe.
35
409
numbe
396
355
294
310
303
286
W-age standardised rate
(Cases/100 000 women-years)
3.0 to 5.99 (7)
6.0 to 8.99 (10)
9.0 to 8.99 (6)
12.0 to 14.99 (9)
15.0 to 17.99 (4)
18.0 to 20.99 (2)
21.0 to 23.99 (3)
Figure 9: Geographical overview of the spread of cervical cancer in Europe [18].
Research into the causes of cervical cancer indicates an infection with HPV as the most important risk
factor. The high-risk HPV types 16 and 18 together account for approximately 70% of all high-grade
cervical intraepithelial neoplasia (CIN) or dysplasia and invasive cervical cancer [19]. In figure 12 the
course of HPV infections is outlined. HPV infections peak shortly after the first sexual contact.
Approximately 10 to 15 years later precancerous lesions can develop as the result of this HPV
infection (early stages). In the years thereafter a small percentage of the lesions develop into invasive
cancer if they are not discovered by screening (Figure 10).
Figure 10: Life history of HPV infections.
HPV vaccination against the most important types of HPV (type 16 and 18) supports a global
prevention strategy against cervical cancer when young girls are vaccinated before the age of the first
sexual contact. In Belgium the mean age for the first sexual contact is 15.5 years with a standard
deviation of 1.3 years (this figure is based on a survey among school-aged children from East and
West Flanders, [20]). Two vaccines are currently available in Belgium against the most important types
HPV 16 and HPV 18. However, At present there is no practical information about the effectiveness of
36
12
HPV vaccination in the long term (>10 years) or about the necessity for a booster . The aim of proper
registration of vaccination is to record the age at which the vaccination was administered and ensure
that each vaccinated person has received all three doses of the HPV vaccine.
13
Only the measure from the original Cancer Plan has been included in the qualitative survey, i.e. the
extension of reimbursement for the HPV vaccine to girls aged 12 to 18 years. The results of the
qualitative survey regarding this measure also indicate the importance of good vaccination registration
to allow monitoring. The importance of this is expressed in a good score on the question related to
“success” (Table 11).
Average
BC and
Median
Patients
CP
Measure 1
4.8
BC and
SD
Patients
CP
4.9
5.0
BC and
n (%)
Patients
CP
5.0
1.7
BC and
Patients
CP
1.6
20 (77%)
17
Table 11: Scoring on the question ‘success’ of action 3 (maximum score = 7).
Discussion
Analysing the effectiveness of the HPV vaccination programmes in terms of a declining number of
invasive cancers will only become possible after 20 years [21]. In the meantime trends can be
monitored by intermediate indicators, such as lesions detected with cervical smears. These are
expected to appear less frequently in the target group.
HPV vaccination is a component of a global strategy against cervical cancer. The vaccines available in
Belgium can provide protection against a very large percentage of cervical cancers. The vaccination
has to be complete before the first sexual contact, and reliable monitoring is important. If this HPV
vaccination appears to be effective in the long term, it should be worthwhile to align individual
screening for cervical cancer to the woman’s vaccination status. In this way, the prevention of cervical
cancer can be organized as efficiently as possible. A good monitoring and registration system for the
vaccinated girls is thus of paramount importance.
12
A booster or additional administration of the vaccine is intended to ensure continuing optimal protection against the virus. This
principle is applied for example with tetanus vaccination: every 10 years a new dose of the vaccine should be administered.
13
37
Findings
1. HPV vaccination forms part of the global prevention strategy against cervical cancer (together
with other HPV-related cancers).
2. The HPV vaccination programme has recently been made available for girls (in first year of
secondary school).
3. The practical arrangements vary between the Communities.
4. Approximately 80% of the intended target group in the Flemish Community received 3
vaccinations during the first 6 months of the vaccination programme. No figures are available
yet for the French and German-speaking Communities.
5. No standardised vaccination registration scheme exists for the whole of Belgium.
6. Provided that standardised registration is performed, a link between HPV vaccination and the
cytopathology cervical cancer registry should be possible.
7. No analyses are available yet to chart the impact of opportunistic HPV vaccinations.
38
ACTION 4: IMPROVING THE DETECTION AND EARLY DIAGNOSIS OF BREAST CANCER
This action consists of 3 measures:
1.
Ensuring the same quality control for the equipment that is used for diagnostic mammography
as for the equipment used for the screening mammography (in preparation).
2.
Free additional investigation after a positive screening test (partially in effect since
14
1 November 2011 ).
3.
Free screening for women at increased risk (in preparation).
In addition, an organised screening programme for breast cancer is in place for women aged 50 to 69.
This systematic screening programme was extended on 1 January 2009 by five years.
Objectives
15
1. Improved detection or early diagnosis of breast cancer.
2. Fewer deaths from breast cancer.
Since a significant number of women continue to have a screening mammography done outside the
organised screening programme, it becomes necessary to harmonise the quality standards of the
equipment used for diagnostic mammography and for the mammotest (measure 1). The quality criteria
for screening within the organised screening programme are much stricter than those for opportunistic
screening; including amongst other things the technical inspections of the medical imaging equipment.
In the NIHDI a proposal is being discussed to harmonise the quality standards for the equipment that
is used for diagnostic mammography and those for the equipment for screening mammography. In this
way the highest-quality images can be obtained with the smallest possible doses of radiation.
Moreover, the obligatory double reading of the screening mammograms reduces the number of false
positives and false negatives, which leads to higher-quality screening for all women.
To optimise the degree of participation in the organised screening programmes and to ensure the
accessibility of health care, the cost of additional investigations (in case the woman has an abnormal
screening result) should also be investigated (measure 2). In this context possible modifications to the
nomenclature for the reimbursement of mammography are also being discussed (measure 3). The
KCE conducted a study to determine the selection criteria for the identification of women with a high
risk based on factors such as family history, a history of irradiation of the upper body at a young age,
high breast density, etc. Two other KCE studies concluded that an extension of breast cancer
screening to the 40 to 49 years age group [22] and 70 to 74 years age group [23] is not
recommended.
14
Since 1 November 2011 breast biopsies have been fully reimbursed, including the material required for them. The possibility
of reimbursing other subsequent investigations (e.g.. ultrasound scans) is still being considered.
15
39
Although controversy exists about the association between breast cancer screening and mortality
[24;25], the scientific majority agrees that there is sufficient evidence that screening for breast cancer
with mammography can reduce mortality from this disease, at least in women aged 50 years and over
[26;27]. The organisation of screening for breast cancer – the most common cancer in women in
16
Belgium – has evolved since its introduction in 2001 . It is carried out in accordance with the
recommendations of the Council of Europe of 2 December 2003 (2003/878/CE) [28].
The most recent report of the Inter-Mutual Insurance Agency (IMA), which pools information from all
health insurance companies in Belgium, revealed that coverage in Belgium is increasing (figure 11 and
[29]). In 1999-2000, before the onset of the organised screening programme, 38% of women aged 50
to 69 underwent a diagnostic mammography, and around 2005 this proportion had increased to about
56%. In 2006-2007, the total coverage, including screening as well as diagnostic mammography,
approached 61%, half of which was performed in the context of the organised breast screening
programme. The proportion of women undergoing a mammography was comparable in the three
regions. However, in Flanders about two-thirds of screening examinations were done as part of the
organised programme, compared to one-sixth in Brussels and Wallonia. In these two regions the
screening philosophy had already been established before the organised screening programme
started. Breast screening programmes had the largest encouraging effect on older women and women
who were weaker socio-economically. However, participation rates within the latter group remained
23% lower compared to the rest of Belgian women [29]. Further investigation by IMA into the reasons
for non-participation in breast cancer screening programmes in Belgium is currently being carried out.
16
In 2001 a screening programme was organised in Flanders, one year later in Brussels and Wallonia.
40
A
B
Figure 11: (A) Coverage of screening mammography and (B) total coverage, including screening as well
as diagnostic mammography, by region (modified from [29]).
According to survival data from the Belgian Cancer Registry for women diagnosed with invasive
cancer between 2004 and 2008, the survival rate for stage I invasive cancer was close to 100%
(Table 12). Patients diagnosed with stage II or III invasive breast cancer still had more than a 70%
chance of survival after five years. Even if it has spread to distant organs, breast cancer, when
compared to other cancer types, is not fatal at five years for a substantial percentage of patients
(around 30%). Five-year relative rates were lower in women older than 70 years compared to those
aged 0-69 years, which was, at least in part, explained by the prevalence of more advanced stages in
the older age group.
41
5-year relative survival for women with breast cancer in Belgium, 2004-2008
Age group
0-49 years
50-69 years
70+ years
All ages
All stages
92%
91%
79%
88%
Stage I
99%
99%
100%
100%
Stage II
94%
94%
90%
93%
Stage III
80%
78%
64%
74%
Stage IV
41%
31%
23%
29%
Unknown
86%
81%
58%
73%
Table 12: Five-year percentage survival for women with invasive breast cancer diagnosed between 2004
and 2008, Belgium.
The coverage of the organised breast screening programmes is about 49% in Flanders, almost 11% in
17
the Brussels Region and almost 10% in Wallonia .
The degree of participation is only one of the indicators set out in the European guidelines to evaluate
organised screening programmes. Other indicators, such as the rate of cancer detection, the
percentage of invasive cancers, the percentage of invasive tumours ≤ 10 mm, etc., have been attuned
to the European guidelines in the various communities in order to arrive at a standardised reporting of
the results of the organised screening programmes.
Screening can increase the risk of overdiagnosis of in situ tumours, since only part of these tumours
will evolve into an invasive cancer that may be lethal. The evolutionary potential is highly variable for
stage I invasive tumours and depends on histological and genetic characteristics of the tumour.
Figure 12 indicates that the incidence of both invasive and in situ breast tumours has remained
relatively stable in Belgium in the last 5 years.
17
Based on data presented to the Screening technical working group of the IKW Cancer section.
42
Figure 12: Incidence of breast cancer in women (invasive + in situ) per region, 1999-2009.
18
From the results of the qualitative survey it is clear that the stakeholders are monitoring the
implementation of this measure closely (Table 13). This is expressed in a high score in the question
“success” for measures that have not yet been introduced. There is however a large variation in the
scores of the various participants, as can be seen from the standard deviations.
The first measure – ensuring the same quality control for the equipment for opportunistic screening as
for the screening equipment used within the organised screening programme – is intended to result in
better imaging with the smallest possible doses of radiation and make it possible to identify all centres
with high-quality screening. The obligatory double reading of the screening mammograms is intended
to bring about a reduction in the number of false positives and false negatives. Concerning the second
measure – examining the cost of additional investigations in the context of complete reimbursement –
there is a question as to whether this is not discriminatory compared with other tumours. At the same
time all participants indicate that there is a great need for clear criteria for identifying people at
increased risk in order to ensure good monitoring and support (measure 3).
Average
Median
SD
n (%)
BC and CP
Patients
BC and CP
Patients
BC and CP
Patients
BC and CP
Patients
Measure 1
4.8
4.6
5.8
5.0
2.5
1.6
16 (62%)
9
Measure 2
4.7
4.0
5.3
4.5
2.5
2.2
16 (62%)
4
Measure 3
3.5
3.2
3.0
3.0
2.7
1.9
18 (69%)
5
18
43
Discussion
The coverage of the organised screening programmes is under the European guideline of 70% [27].
Thanks to more stringent quality criteria, the quality of the screening is currently better within the
organised screening programme than with opportunistic screening. In addition to ensuring quality and
increasing coverage, the next steps (i.e. in case of an abnormal screening test) should take place as
smoothly as possible.
Findings
1. The degree of participation in the organised breast screening programmes in Belgium as a
whole lies under the European guideline of 70%.
2. Breast cancer can be detected in two different ways: during the organised screening
programme or by means of opportunistic screening, with the latter meeting lower quality
requirements.
3. Screening can lead to overdiagnosis, which leads to a (high) cost for the health care system.
4. The KCE has already published a number of reports regarding breast cancer screening:
a. A report on the definition of women with an increased risk of breast cancer and the
technical methods for breast cancer screening [30];
b. A report recommending not to extend the organised screening programme for breast
cancer to women aged 40-49 [22].
c.
A report recommending not to extend the organised screening programme for breast
cancer to women aged 70-74 [23].
5. Standardised reporting of the results of the organised screening programmes does not exist
within the various communities. At present a proposal for standardised reporting is being
prepared. All communities have adopted the indicators employed in the European guidelines.
6. There is a need to evaluate the impact and efficiency of the organised screening programme.
7. More pT2s and pT4s are seen in the 70+ group compared to the other age categories.
8. There appears to be a lower 5-year survival in the 70+ group compared with other age groups.
44
ACTION 5: SYSTEMATIC SCREENING OF CERVICAL CANCER
Three measures are included in this action:
1. A programme for the systematic screening of cervical cancer in women aged 25 to 64 (in
19
preparation ).
2. Increased reimbursement for additional investigations (in preparation).
3. Integration of the test results of positive tests in the data of the Belgian Cancer Registry (in
effect since 2011).
Objectives
20
1. Improved detection or early diagnosis of cervical cancer.
2. A lower incidence of cervical cancer.
3. Fewer deaths from cervical cancer.
The Flemish Community will start an organised screening programme for cervical cancer in 2013,
based on a call-recall system. The programme will involve a smear every three years for women aged
25 to 64. At present obligatory health insurance reimburses a smear every two years.
Cervibase, a cytopathology registry, has been implemented in the Belgian Cancer Registry to provide
quality control, monitoring and evaluation in preparation for the organised screening programme in
Flanders.
Among all malignant tumours, cervical cancer is the one that can be most effectively controlled by
well-organised cytological screening. This is because the progression of cervical cancer, from a
precursor lesion into an invasive stage, is a multi-step process and may take as long as 10 to 20
years. Moreover timely diagnosis by cervical cytological examination and adequate treatment of
precursor lesions can diminish cervical cancer incidence up to 80%. Therefore cervical cancer seems
to be an ideal candidate for screening [31]. In 2003 the Council of Europe recommended the
implementation of population-based cervical cancer screening for women aged 25 to 64 at intervals of
three to five years, in accordance with the European guidelines [32;33].
According to data from the Belgian Cancer Registry, cervical cancer was the eleventh most frequent
type of tumour in women in Belgium in 2009. However, death due to cervical cancer was rather low,
putting cervical cancer in 17th position of all cancer deaths in Belgium in 2008. When comparing data
from 2004 and 2009, an increasing incidence rate could be observed for carcinoma in situ between
19
The Flemish Community will start their screening program in 2013 with a pre-launch test in 2012. The French region launched
an awareness campaign in June 2012.
20
45
2004 (31.8/100,000 person years) and 2009 (39.2/100,000 person years). A slight decrease in
invasive cancers could be observed for this time period.
If the incidence (occurrence) of pre-invasive and invasive cervical cancer in Flemish women is
examined over a period of 11 years (1999-2009) , it appears that for women younger than 65 years of
age the incidence of pre-invasive lesions was higher than that of invasive tumours (figure 13). The
opposite is true for women over the age of 65. The incidence of pre-invasive lesions has continued to
Percentage of cervix cancers with known stage
(%)
rise during the period 1999-2009, mainly in women aged 25-64.
100
90
80
70
60
50
40
30
20
10
0
N=2,657
N=199
N=2,294
N=164
All Ages
0-24
25-64
65+
Age Group
In Situ
I
II
III
IV
Figure 13: Incidence of cervical cancer by stage and age group in Belgium in 2009. Only cancers with
known stages (in situ, I-IV) are taken into account; cancers with an unknown stage make up 0 to 23% of all
cancers (known and unknown stages together) per age group (Belgian Cancer Registry).
During the same period, incidence rates for invasive cervical cancer remained stable for all ages,
except for tumours in stage II and III, for which incidence rates decreased considerably. No significant
trends have been observed for the 65+ age group except for stage II tumours, for which a significant
drop was observed.
46
Figure 14: Screening coverage and number of smears per woman over a 3-year time period, per age
group in Belgium, 2006 [34].
Figure 14 shows the coverage for cervical cancer screening during a 3-year period in Belgium in 2006
(red curve). The average coverage over all age groups was 61% and was comparable in the different
communities. Coverage was highest (70%) in women in the age group of 25-34 years. However, the
number of smears taken was theoretically sufficient to cover more than 100% of the target group over
a time span of 3 years (green curve; the ratio of the number of smears to the number of women is
higher than 1). To be precise, every screened woman had 1.88 smears over a 3-year period. Only part
of this overconsumption was used to monitor women who had already been found to have uterine
cervix lesions. The excessive use of smears was high in all parts of Belgium.
In addition to the excessive use of smears, many colposcopies were performed (examination of the
vagina and cervix). Normally a colposcopy is expected in fewer than 5% of the smears. In Belgium a
colposcopy is performed for every three smears [19].
Overscreening entails extra costs for the health care system. Similar results could be obtained with far
fewer smears and colposcopies.
21
The measures of this action are still in preparation, hence the lower score (Table 14).
Average
Median
SD
n (%)
BC and CP
Patients
BC and CP
Patients
BC and CP
Patients
BC and CP
Patients
Measure 1
3.0
4.2
3.0
4.0
1.7
1.8
22 (85%)
13
Measure 2
3.8
3.5
4.0
3.5
1.9
2.1
15 (58%)
4
Measure 3
3.8
4.7
3.5
5.0
2.2
2.0
18 (69%)
7
21
47
Discussion
Cervical cancer is discovered at an early stage in all age categories (less pronounced above the age
of 65) and has a relatively low mortality. Taking smears is widely used in Belgium as part of a global
strategy to combat cervical cancer. However, the coverage of cervical cancer screening is much lower
in women with RVV status (entitled to increased Insurance allowance) [34]. Europe recommends that
at least 85% of women aged 25 to 64 years should be screened every 3 to 5 years in the populationbased screening programmes [35].
Findings
1. At present only opportunistic cervical cancer screening exists in Belgium.
2. Smears are reimbursed biennially by obligatory health insurance.
3. Screening coverage in the Belgian target group aged 25-64 years is insufficient.
4. Despite this, there appears to be overscreening (mainly in the 25-34 age group).
Overscreening leads to high costs for the health care system.
5. A cytopathology registry has been created to provide quality control, monitoring and
evaluation in preparation for an organised screening programme for cervical cancer.
6. The possibility of including a HPV test in a screening programme as a screening tool needs to
be examined.
48
ACTION 6: CONSULTATION FOR THE PREVENTION OF HEALTH RISKS
This action contains two practical measures:
1. Free preventive health check-up with a GP for people aged 45 to 75 years and with a Global
Medical File (GMD) (in operation since 1 April 2011).
2. Training of physicians regarding the prevention of health risks (on hold).
Objectives
22
1. Increased awareness among GPs of factors that are associated with an elevated risk of
cancer.
2. Increased awareness in the target group of factors that are associated with an elevated risk of
cancer.
Offering a free preventive health check-up for people aged 45 to 75 years and with a GMD was tested
from 1 April 2011 to 31 December 2012 (measure 1). From April to 31 December 2011, 159,052
preventive consultations were recorded. The eligible population
23
is much larger. Nine months after the
check-up measure was introduced, 9.41% of this target population had been reached. In Belgium
24
approximately 1,690,458 people (age 45 to 75) have a GMD with their GP . The GMD holds all the
information about the patient’s health, including their medical history, use of medicines, treatments
followed, specialists’ reports and other care providers’ reports.
During the preventive health check-up the GP evaluates the patient by means of an age-related
checklist. Various criteria with regard to the patient’s lifestyle, cardiovascular system, screening
history, vaccination status, etc., are considered.
This measure has been extended for one year.
Consideration is being given to the provision of electronic training of physicians (measure 2) following
the example of the e-learning modules for dementia and incontinence. The platform has been
developed, but it is not yet operational.
In 2007 the World Cancer Research Fund and the American Institute for Cancer Research published
their report on the association between food, nutrition, physical activity and the prevention of cancer
[36]. The exhaustive analysis was based on 20 independently commissioned and conducted
systematic reviews of the literature published up to 2006. Conclusions with regard to physical activity
22
See 2011 report results for the definition of the target group.
24
Estimate based on population data and data recorded in the GMD in 2009 (see also Evaluation of the Cancer Plan 20082010: Results 2011)
23
49
and the consumption of fruit, vegetables, alcohol and soft drinks as listed below were presented. This
information could be used as a basis for evaluating the present action. The figures for Belgium are:
•
In 2008 54% and 13% of Belgian men had issues with overweight and obesity (respectively);
for Belgian women the numbers were 40% and 14% (SIPH data).
•
Alcohol consumption has increased from 8% to 12% in the last 12 years (1997-2008; based
on SIPH data).
•
The consumption of vegetables and fruit has risen in the last 8 years (2001-2008; based on
SIPH data).
In addition to these lifestyle factors, we should keep an eye on the ten alarm signals for cancer
(Foundation against Cancer):
1. Continuing hoarseness or persistent cough, especially in smokers or ex-smokers.
2. Difficult swallowing, mainly in people who smoke and drink alcohol.
3. Change in the pattern of defecation: persistent diarrhoea or constipation or alternation of the
two.
4. Urination problems in men.
5. Loss of weight, tiredness or persistent fever without a clear cause.
6. Abnormal loss of blood (vaginal outside the monthly periods or after menopause, in the urine,
stools or sputum, bruises that appear spontaneously, etc.).
7. A small lump or swelling, anywhere on the body (for example in a testicle, a breast, under the
skin, etc.)
8. A change in breast: retraction, loss of fluid via the nipple, redness, etc.
9. Change in a mole or a new mole.
10. A wound that doesn’t heal, on the skin or in the mouth.
Attention is also being given to awareness campaigns for organised screening programmes and to
alarm signals for other chronic conditions, such as cardiovascular diseases.
25
From the results of the qualitative survey it appears that patients rate this measure higher than
members of the BC and CP (based on the average scores and median). The remarks of the
participants from the BC and CP point to a reserved attitude related to the limited eligible target group,
the GP’s expertise and the quality of the consultation (Table 15).
Average
Median
SD
n (%)
BC and CP
Patients
BC and CP
Patients
BC and CP
Patients
BC and CP
Patients
Measure 1
3.3
4.6
3.0
5.0
1.6
1.6
17 (65%)
10
Measure 2
2.3
5.0
2.0
5.0
1.2
1.2
10 (39%)
6
25
50
Discussion
Since the introduction of this measure only a small part of the target group has been reached. An
evaluation of this action will take place before the end of 2013. At present we cannot yet investigate
the added value of this consultation. However, this consultation provides an for the GP and the patient
to discuss lifestyle factors associated with health risks. Often these lifestyle factors do not cause
complaints in the short term, but complaints and problems may appear at a later date. This makes it
more difficult to motivate people to change their behaviour.
Findings
1. The preventive health check-up cannot yet be evaluated. The first results indicated use within
the intended target group.
2. The consultation can be used to increase awareness among people aged 45 to 75 years – the
period during which a great many chronic problems appear – to enable early diagnosis and to
motivate them to make changes in their lifestyle.
3. The preventive health check-up can support screening. For this the exchange of information
between the GP and specialists needs to be optimised. Both parties need to be aware of the
added value that each of them can provide.
4. The preventive health check-up has been extended by one year (to 31 December 2013).
5. In the evaluation, special attention needs to be given to the identification of the correct age
group and the possible ways of identifying the impact of this measure.
51
ADDITIONAL ACTION: IMPROVE DETECTION AND EARLY DIAGNOSIS OF COLORECTAL
CANCER
This action was added to the Cancer Plan later on and contains one measure: the organisation of
population-based screening for colorectal cancer. This measure has been implemented in the French
and German-speaking Communities since 1 March 2009. The Flemish Community will also start an
organised screening programme for colorectal cancer in 2014.
Objectives
1. Fewer deaths from colorectal cancer.
2. A lower incidence of colorectal cancer.
3. Improved detection or early diagnosis of colorectal cancer.
Colorectal cancer mostly begins as a precancerous polyp that develops into a colorectal tumour
following the adenoma-carcinoma sequence. The identification of a well-determined premalignant
lesion, the adenomatous polyp, together with the good survival rate associated with early detection,
makes colorectal cancer an ideal candidate for screening.
Since 1 March 2009 the French and German-speaking communities have been organising a colorectal
cancer screening programme for people aged 50 to 74 years by means of a biennial detection test for
blood in the stools (FOB test). Between 1 March 2009 and 28 February 2011, 1,141,565 invitations
were sent to encourage the target group to consult their GP in order to participate in the screening
programme. An information brochure was enclosed in the mailing. Based on the patient’s risk profile,
the GP decides whether the gFOB test (average risk) or a colonoscopy (high risk) is most suitable.
The patients can do the gFOB test at home by taking samples of three successive stools, which are
sent for analysis. If the test is negative (there are no traces of blood), the person concerned is invited
again two years later. If the test is positive, the patients is referred for a colonoscopy. If the result is
negative, then five years later the person again receives an invitation to participate in the screening.
The GP plays a central role in providing information and selecting the correct screening procedure,
and must also look after the feedback and monitoring the patients whose gFOB tests were positive. By
the end of 2010, 5,107 GPs were involved in setting up and developing the screening programme,
corresponding to about 70% of all GPs active in the Brussels Capital and Wallonian Regions
(www.sante.cfwb.be). Of the 1,141,565 invitations that were sent between 1 March 2009 and
28 February 2011, 42,055 people responded. Another 36,697 people participated spontaneously in
the programme. This corresponds to a participation rate of 6.98%. Of the participants with a positive
gFOB test (n=2,167), 79.2% (n=1,716) underwent a colonoscopy. For more detailed results, we refer
see the report Results 2011 [8]. With the exception of the participation rate, this programme complies
with the European recommendations for colorectal cancer screening.
52
The Flemish Community will start a population-based screening programme for colorectal cancer in
26
2014 , but a pilot project was already launched in 2009. The results showed that an invitation by
letter, attached to the stool sample kit, resulted in greater participation rate (64.3%) than with the
group that was invited to request a kit from their GP (24.8%). Compared to the first screening round of
breast cancer in Flanders, for which a participation rate of 33% was achieved, the participation rates
for the colorectal cancer screening trial are acceptable. Another aspect that must be considered is that
taking a stool sample may be a delicate subject. Of the 435 participants who had a positive FOB
result, 73.1% (n=318) underwent a colonoscopy.
In order to find out how the participants in the Flemish pilot project experienced the screening
procedure and to explore the reasons for not taking part, 2,000 participants and 1,600 non-participants
were sent a questionnaire. The percentage response was 69.3% for the participant group and 43.2%
for the non-participants group. Despite all information campaigns, the main reasons for not taking part
in the screening were that the individuals felt healthy, they had no complaints, and they did not feel a
need to be screened for a disease which they didn’t think they had. Thus a ‘stools taboo’ was not the
most important reason for non-participation (www.dikkedarmkanker.be).
The organised screening programmes are being performed in accordance with the Council of Europe
recommendations of 2 December 2003 (2003/878/EC) [28].
In 2009 8,230 new cases of colorectal cancer were registered in Belgium. As a consequence,
colorectal cancers were the second and third most frequently occurring types of cancer in Belgian
females and males, respectively. Delayed detection is still associated with an increased mortality rate.
The five-year survival for colorectal cancer is 62% in men and 65% in women (numbers from the
Belgian Cancer Registry).
From monitoring of trends over an 11-year period (1999-2009) in Flanders, it is clear that the incidence
of colorectal cancer has increased in this period. More than 70% of patients diagnosed with colon
cancer in 2009 was 65 years or older. If we look at the incidence rate by stage, combined for all ages,
a significant increase is observed in stage I in both men and women. The incidence rate of stage IV
colon cancers has increased strongly in women, while in men more stage III tumours were diagnosed.
At the same time stage II colon cancers in males decreased significantly.
Approximately 30% of all colorectal tumours are rectal tumours. In 2009 the majority (65-68%) of
diagnoses occurred in patients of 65 years or older. Rectal cancer was also diagnosed more
frequently in males than in females in all age groups. When looking at all age groups combined, no
significant increase in incidence was observed in Flanders during the period 1999 to 2009. The
incidence rate per stage showed a significant increase in stage I. In addition a significant increase in
stage III rectal tumours was seen in women, while in men the proportion of stage II tumours declined
significantly. The increase in stage I rectal tumours may partly be related to the introduction of CT and
MRI scans, which provide more information about tumour stages.
26
A trial region will start in 2013.
53
There are no results from the qualitative survey with regard to this action because the survey is only
directed at the actions and measures included in the original Cancer Plan of 10 March 2008.
Discussion
The first results of the organised screening programme in the French and German-speaking
communities are too low with regard to participation. The European recommendations indicate that
95% of the target group should be invited in order to maximise the impact of the screening. At least
45% of invitees should be examined, but it was recommended to aim for a rate of at least 65% [37].
The results regarding the percentage of positive tests, conducting a colonoscopy after a positive gFOB
test, and the rate of detection of colorectal cancers and adenomas agree with the European
recommendations.
The figures for colorectal cancer as presented in this document serve as a reference measurement. If
the degree of participation becomes sufficiently high in future, we can investigate the effect of the
population-based screening programmes in greater depth. By implementing the organised screening
programme we expect more diagnoses at an earlier stage. The ultimate goals of this organised
screening programmes are to positively affect the mortality figures for colorectal cancer and to provide
a better quality of life for patients with colorectal cancer. Since screening for colorectal cancer can
result in an early diagnosis of colorectal cancer, this may lead to a less burdensome treatment with
fewer adverse effects. Also, since polyps can be detected and removed via a colonoscopy – thereby
removing a significant risk factor for the development of colorectal cancer – organised screening
programmes may result in fewer cases of colorectal cancer in the future.
Findings
1. Colorectal cancer is one of the three most common cancers for both men and women.
2. Organised screening programmes have not yet been implemented for the whole of Belgium.
The French and German-speaking communities started an organised screening programme in
March 2009. The Flemish community plans to roll it out in 2014.
3. The participation rate in this programme is low; the different methods of invitation within the
organised screening programmes must be investigated and compared. Other results of the
organised screening do however agree with the European guidelines.
4. A consensus has been reached between gastroenterologists and GPs. Eighty (80 per cent of
GPs in the French and German-speaking communities have forwarded at least one test.
5. Concerning the invitations for organised screening programmes, the information provided to
the intended target group should be as correct and complete as possible (also in terms of
possible risks associated with a colonoscopy, for example).
6. Follow-up of all available figures (both of the opportunistic and the organised screening) is
necessary.
54
DOMAIN 2: CARE, TREATMENT AND SUPPORT OF THE PATIENT
ACTION
7:
SPECIFIC
SUPPORT
FOR
THE
PATIENT
WHEN
THEIR
DIAGNOSIS
IS
COMMUNICATED
1. The introduction of an extended consultation for communicating the diagnosis. This measure
has been developed within a project for re-evaluating the Multidisciplinary Oncological
Consultation (MOC). Reimbursement of an extended consultation was introduced on
1 November 2010. After taking part in a MOC, both GPs and specialists are allowed to claim
this extended consultation once only.
2. Introducing training opportunities for doctors and other health care workers in order to develop
their communication skills for dealing with cancer patients and their relatives.
3. Development of a communication protocol that supports care providers in both communicating
the initial diagnosis and passing on bad news during the treatment or announcement of a
recurrence.
The first two measures are up and running. The communication protocol has not yet been developed.
Objectives
27
This action is intended to result in multidisciplinary and patient-oriented communication.
The extended consultation, during which time the physician informs the patient extensively about their
disease and potential treatment, is predominantly being claimed by specialists (Figure 15). In 2011
specialists and GPs respectively submitted 12,900 and 416 claims for an extended consultation.
Looking at the most recent incidence figures, this corresponds to 21.2% and 0.7% of new cancer
diagnoses.
An extended consultation gives the doctor the opportunity to provide patients with a clear explanation
of the diagnosis, the proposed (additional) investigations, and the treatment plan as described in the
MOC report. The numbers presented above also imply that in 2011 13.5% of MOCs were already
followed by a extended consultation. At present we have no information about whether the use of this
extended consultation differs among the various oncological care programmes.
27
55
GP
3%
specialist
97%
Figure 15: Proportion of extended consultations with specialists (green) compared with GPs (GP, orange)
from implementation (November 2010) to the end of 2011. Source: NIHDI figures, processed by the Cancer
Centre.
At the same time financing is being provided for training opportunities for physicians, nurses and
paramedics in order to develop their communication skills for dealing with patients and their relatives.
These training courses are organised by the Cédric Hèle Institute and the Psycho-Oncology Centre.
In 2010 more than 300 health care workers enrolled. In the Cédric Hèle Institute 44% of the 156
participants were doctors and 56% were nurses or paramedics. In the Psycho-Oncology Centre
doctors represented 7% of the 150 enrolments, nurses 75% and paramedics 17%.
In 2011 18% of the 154 enrolments at the Cédric Hèle Institute were doctors, 53% were nurses and
the remaining 29% were other care providers. In the Psycho-Oncology Centre 2% of the 168
participants were doctors, compared with 97% nurses and 1% paramedics.
The third measure includes an official communication protocol that is intended to provide a suitable
structure for communicating the diagnosis, passing on bad news during the treatment ,or announcing
a recurrence as easily as possible. In close collaboration with representatives of patients and with
experts, the College of Oncology has been working on a proposal for a communication protocol. At
present a proposal for practical measures is being examined by the FPS Public Health.
The diagnosis of cancer and its treatment is a stressful event that generates fears, uncertainty,
distress and psychosocial needs. Between 10 and 50% of cancer patients experience high levels of
distress [38]. Untreated, distress may have long-term detrimental consequences on patients’
compliance with treatment, survival, desire for hastened death, and the quality of life of both patients
and their relatives. The physicians' communication during the first consultation was shown to be
related to a better long-term adjustment [39].
Therefore it is important that care providers take sufficient time to inform and support their patients.
When both the care provider and the patient have the same information, the process of ’informed
decision making’ can be facilitated.
56
Notification of a severe disease such as cancer is a stressful event for the patient, the patient’s
relatives and the care providers. It is very important to get through this as smoothly as possible. This
action is intended to provide care providers and patients with a structure in which they can jointly
discuss the diagnosis and the treatment plan. As has been done in our neighbouring countries, we
need to publish guidelines that enable the optimisation of communicating a patient’s diagnosis across
the various oncology services. These guidelines should ensure that GPs play a central role because
they are the patient’s first point of contact. Although specialists handle the treatment of the cancer, the
GPs have been monitoring their patients for a relatively long time and they are in a better position to
estimate the patient’s ability to cope with the diagnosis and its treatment.
28
From the results of the qualitative evaluation, it is clear that there is a large variation in the way in
which stakeholders evaluate a extended consultation (measure 1; based on the standard deviations).
The scores of the participants from the BC and CP are lower than the scores given by the patients
(Table 16). Patients wonder whether the time provided corresponds to the effectively desired time, and
indicate that it is difficult to estimate when a consultation can or must last longer because the patient
has a need for it.
Average
Median
SD
n (%)
BC and CP
Patients
BC and CP
Patients
BC and CP
Patients
BC and CP
Patients
Measure 1
3.8
4.8
3.5
6.0
2.1
2.1
22 (85%)
9
Measure 2
3.8
4.2
4.0
4.0
2.1
1.6
18 (69%)
10
Measure 3
3.5
4.0
3.0
5.0
2.2
1.9
11 (42%)
5
28
57
Discussion
The measures described within this action are intended to enhance the circumstances in which the
diagnosis of cancer is communicated to the patient. We cannot evaluate how patients and their
relatives experience the communication process, nor can we assess the impact of the measures taken
within this action on their experience.
There is a low uptake among the specialists: one-fifth make use of the measure. It is remarkable that
GPs make little use of a extended consultation. However, no data is available for investigating the
reasons for the limited use of the extended consultation option by GPs. The most obvious reason is
that they are not aware of the measure. In addition, GPs are rarely involved in the MOC. Hence, one
cannot expect large-scale use of extended consultations by GPs. In the future more attention should
be given to the involvement of GPs in oncological care programmes.
Sound communication regarding the diagnosis of cancer and the treatments is essential for highquality cancer care, but the training courses in communication skills only reached a small part of the
intended target group.
Findings
1. In 2010 a extended consultation (after a MOC) was introduced to provide an opportunity for a
detailed discussion of the cancer diagnosis and the proposed treatment plan with the patient.
2. The uptake among specialists is low; GPs also make little use of extended consultations. It is
worthwhile to investigate the third payers system in the context of the extended consultation.
3. More publicity should be given to this measure.
4. At present there is no overview of how the use of this extended consultation option is
distributed among the oncological care programmes.
5. The number of nurses and paramedics that participated in the training courses in
communication was larger than the number of doctors.
6. No data is available for evaluating the added value of the extended consultation for the patient
or care provider.
7. Organising clinical pathways can result in an added value. The practical development of this
measure needs to be evaluated in relation to action 9.
58
ACTION 8: RE-EVALUATION OF MULTIDISCIPLINARY ONCOLOGICAL CONSULTATION (MOC)
This action contains two measures:
1. An obligatory Multidisciplinary Oncological Consultation (MOC) for all new cancer cases.
During the MOC, at least four physicians from different disciplines discuss the patient's
diagnosis and treatment options It was devised in order to improve the quality of the cancer
patients’ treatment (case analysis, clarification of the diagnosis and development of a
treatment plan). The MOC is also important for supplying information to the Cancer Registry’s
database. In practice we have:
A ‘first’ obligatory MOC for new cancer cases.
If necessary, a follow-up MOC.
The possibility of referring the patient to an additional MOC in another hospital.
2. A 5% reassessment of the fees that are claimed in the context of the MOC, such as the fees
for coordinating or participating in a MOC by medical oncologists/haematologists.
In 2010 two measures were added:
Re-evaluation of specific consultations with medical oncologists, haematologists and
endocrinologists.
Encouraging GPs to participate in the MOC by means of two pilot projects involving
video conferences and information sharing.
Objectives
29
This action is intended to:
1. Bring about the best possible treatment;
2. Facilitate collaboration between the various disciplines.
Instigated by the Cancer Plan, the NIHDI added two new nomenclature codes in November 2010 : one
for a follow-up MOC and one for an additional MOC when a patient is referred to another hospital. The
existing code was further specified as ‘first MOC’. A first MOC is mandatory for every new diagnosis of
cancer (Tables 17 and 18). The data of both booked MOCs and executed MOCs is shown. The
number of booked MOCs corresponds to the received invoices that have been checked and validated
by the health insurance companies. The number of executed MOCs is determined by regrouping the
booked MOCs based on the date of the execution of the MOC.
For 2011 we expect a total of 62,107 new diagnoses in Belgium: 33,623 men and 28,484 women
(based on the data from 2009).
29
59
2010
(Nov-Dec)
2011
16,610
72,452
Follow-up MOC
279
25,760
Additional MOC
3
484
Year
Based on the ‘old’
MOC system
2010
(Jan-Oct)
74,996
First MOC
Table 17: Number of booked MOCs per type in Nov-Dec 2010 and in 2011 (Source: NIHDI). The ‘old’ MOC
system records the MOCs executed before 01/11/2010. Note: In the legislation a limitation period of 2 years is
provided, which means that in the ‘new’ MOC system ‘old’ MOCs continue to be processed (only for the first
MOC). In practice it appears that a maximum of 10% of the booked medical acts are involved. Approximately
6 months after a particular month, a clear picture can be obtained of the actual activity in that month.
2010
(Nov-Dec)
2011
(Jan-June)
First MOC
9,453
27,633
Follow-up MOC
2,726
13,298
Additional MOC
75
159
Year
Table 18: Number of MOCs executed per type in Nov-Dec 2010 and in 2011 (Source: NIHDI). Note: In the
legislation a limitation period of 2 years is provided, which means that in the ‘new’ MOC system ‘old’ MOCs
continue to be processed (only for the first MOC). In practice it appears that a maximum of 10% of the booked
medical acts are involved. Approximately 6 months after a particular month, a clear picture can be obtained of the
actual activity in that month.
It appears from the NIHDI figures that the number of cancer patients discussed in a MOC has been
increasing rapidly since the formal launch of MOCs in 2003 (Figure 16). In 2003 there were 16,375
patients. In 2005 that number had already tripled to 54,301. In 2007 and 2008 a further increase was
noted. One of the reasons for this significant growth may be the retrospective follow-up of patients with
existing tumours, after the publication of the follow-up recording form (end of 2006).
The increase in the number of MOCs continued up to 2011 (included). The most recent increase can
probably be explained in part by the introduction of the Cancer Plan in 2008 and by financial support
from the government for a data manager since 2008 (Royal Decree of 20 September 2009).
This data manager is intended ease the doctors’ administrative load. This point is in fact often cited as
the reason for not completing the MOC recording form (see also Action 11). Moreover the extra
financial support for personnel within the oncological care programmes – based on the number of
recorded MOCs (as set out in the RD of 20 September 2009, see also Action 10) – possibly accounts
for the extra increase in the number of MOCs since 2008.
60
Number of MOCs
120.000
100.000
80.000
60.000
40.000
20.000
0
2003*
2004
2005
2006
2007
2008
2009
2010
2011
Year
Figure 16: Number of booked MOCs from 2003 to 2011 (* starting 01-02-2003). In November 2010 the followup MOC and additional MOC were introduced. Source: NIHDI.
During the MOC doctors from different disciplines discuss the patient’s diagnosis, the treatment
options and the treatment strategy that will be offered to the patient. To invoice for a MOC the doctors
are obliged to fill in a registration form with details of the patient, the tumour and the treatment. This
standard form is used by the Cancer Registry and has led to an improved cancer recording in Belgium.
When data on tumour characteristics from the Cancer Registry and from the IMA’s health insurance
data is linked (Figure 17), we notice an increasing percentage of cancer patients discussed in a MOC
(from 63.0% in 2007 to 67.7% in the first six months of 2008).
Patients with breast cancer (84.4%) are most often discussed, followed by patients with mesothelioma
(75.8%) and cancers of the female genitalia (75.1%). Patients with cancer in the respiratory tract and
gastrointestinal system, and with head and neck cancer, are also discussed regularly. Patients with
bone and soft tissue sarcomas, malignant melanomas, thyroid cancer, prostate cancer,
haematological tumours and tumours of unknown primary site are discussed the least in a MOC. The
tumour stage (I to IV) appears to have no effect on the number of patients that are discussed in MOCs
for colorectal cancer, laryngeal cancer, lung, breast and testicular cancer (Figure 17).
61
Percentage of cancer patients discussed in a MOC
100
90
80
70
60
50
40
30
20
10
0
A: Colon
I
100
90
80
70
60
50
40
30
20
10
0
II
III
IV
Unknown
2007
B: Rectum
2008
I
II
III
Stage
100
90
80
70
60
50
40
30
20
10
0
C: Larynx
I
100
90
80
70
60
50
40
30
20
10
0
II
III
IV
I
Unknown
II
III
100
90
80
70
60
50
40
30
20
10
0
II
III
IV
Unknown
Stage
E: Breast
I
Unknown
D: Lung
Stage
100
90
80
70
60
50
40
30
20
10
0
IV
Stage
IV
Unknown
F: Testis
I
Stage
II
III
Unknown
Stage
Figure 17: Percentage of cancer patients discussed in a MOC, per stage, in Belgium in 2007 (blue bars)
and in 2008 (red bars) for patients with (A) colon cancer, (B) rectal cancer, (C) larynx cancer, (D) lung
cancer, (E) breast cancer and (F) testicular cancer (Source: Cancer Registry).
MOCs are part of standard cancer care in many countries such as the United Kingdom, Australia, the
United States and Canada. It is the intention to evaluate the impact of MOCs on how doctors practice
their profession and on the results for the patient. Although the scientific evidence is limited, all
relevant studies conclude that a multidisciplinary setting results in a positive impact on practice and
positive results for the patient with regard to diagnosis and/or planning of the treatment, survival and
satisfaction. Physicians also consider the multidisciplinary approach as a positive evolution and report
greater satisfaction in terms of collaboration and communication.
62
30
Only the measures from the original Cancer Plan were included in the qualitative survey, i.e. the
introduction of the various MOCs (measure 1) and the increase of the fees for the coordination of, or
participation in, MOCs by specialists in medical oncology, clinical haematology or paediatric
haematology (additional measure).
It appears from this survey that the modifications brought in for the MOC are received positively. A
recommendation for the future is to adapt the composition of the MOC to the type of tumour, such as.
the presence of a neuropsychologist for brain tumours or a geriatrician for geriatric oncology patients
(see [9;10]). Nevertheless, it is generally agreed that this measure contributes effectively to improving
the operation, composition and effectiveness of a MOC (Table 19).
Average
Median
SD
n (%)
BC and CP
Patients
BC and CP
Patients
BC and CP
Patients
BC and CP
Patients
Measure 1
4.6
4.3
5.0
4.0
2.0
1.4
23 (89%)
11
Measure 2
5.1
5.0
5.5
5.0
1.9
0
13 (50%)
2
Discussion
Multidisciplinary oncologic consultations (MOCs) were introduced to improve the quality of cancer
patients’ treatment. They are likewise important for supplying data for the Cancer Registry”, according
to the Cancer Plan 2008-2010.
25 November 2011.
31
The conditions for charging for a MOC were published in the RD of
32
In reality it appears that the number of MOCs is higher than the number of anticipated cancer cases
and the cases recorded in the Cancer Registry.
Although the Cancer Plan intended for a MOCs to be obligatory for each new diagnosis of cancer, it is
not obligatory according to the law. However, the registration itself is obligatory whenever a MOC is
organised. The number of MOCs is used to determine the financing of supporting disciplines (nurses,
social workers and psychologists – Action 10; data managers – Action 11 and dieticians since 2011).
30
Onkelinx L. (2008), Cancer Plan, online:
http://www.health.belgium.be/internet2Prd/groups/public/@public/@dg1/@acutecare/documents/ie2divers/13614502_nl.pdf, 46
32
Royal Decree of 25 November 2002 to amend the Royal Decree of 14 September 1984 establishing the nomenclature of the
medical acts regarding the obligatory insurance for medical care and payments, Belgian State Gazette 13 December 2002,
55973.
31
63
Based on other data (see Action 11) we know that some cancer diagnoses are not registered via the
clinical network (i.e. MOC). In future the MOC system should be investigated in more detail.
Findings
1. A critical discussion of the MOCs is necessary.
2. Particular groups of patients are discussed less.
3. The MOC should be organised more specific (e.g. dependent on the stage or type of tumour).
4. A MOC is not obligatory for each diagnosis of cancer.
5. The use of a registration form is obligatory for each MOC.
6. At present, there is no way of checking whether the recommendations of the MOC are
followed.
7. The introduction of MOCs has contributed significantly to a greater completeness of cancer
registration in Belgium.
8. There is no long-term monitoring of the patients themselves, the results or the quality of the
treatment centres.
64
ACTION 9: INTRODUCTION OF CARE PATHWAYS FOR CANCER PATIENTS
This action consists of two measures:
1. The participation of the GP in order to promote the progress of the cancer treatment (pilot
projects September 2009 – September 2010).
2. The definition of care pathways for cancer patients (in preparation).
Objectives
33
This action is intended to bring about the best possible care for each cancer patient.
The elaboration of care trajectories in oncology awaits the evaluation of the initial projects of care
pathways for renal failure and diabetes launched in 2009 by the NIHDI. The results of these pilots are
expected in the spring of 2013. In addition, the KCE investigated, in the context of the Cancer Plan,
what is needed to develop a Belgian quality system for cancer care [40] (measure 2). All the essential
elements appear to be present in Belgium, but better integration and coordination between the various
players is required. Previous KCE studies on breast and testicular cancer indicate that there is still
room for improvement, and that a possible difference in quality between hospitals may exist [41;42].
To encourage the participation of GPs in the MOC, two pilot projects have been launched: one via
video conferences and the other via electronic bidirectional information exchange (measure 1). The
degree of participation of GPs via bidirectional data exchange fluctuated around the 20% mark (based
on data from the interim report). The main causes of this low degree of participation are thought to be
the unawareness of GPs together with a user-unfriendly IT procedure. A solution to these barriers is
being identified at present.
The degree of participation in the video conferences project fluctuated around 50% (of which 36% only
participated once). Before the introduction of the video conference system, 17% of GPs took part in
the MOC. After the introduction 19% of GPs participated in the MOC, 70 of which via video conference
and 130 by their physical presence.
The KCE is working, in close collaboration with the College of Oncology and the Belgian Cancer
34
Registry
on the definition of guidelines for tumours. Guidelines function as the basis for care
pathways. Twenty-one per cent of the tumours in Belgium are covered by guidelines (corresponding to
54% of the patients) (Table 20).
33
34
The cooperation with the Cancer Register Foundation is primarily directed at the definition and measurement of the indicators
and quality projects.
65
ALREADY PUBLISHED GUIDELINES
FIRST PUBLICATION DATE OF THE
TUMOUR SITE
GUIDELINES
Brain tumours (neuro-oncology)
2008
Breast cancer
2012
Colon cancer
2004 (update expected in 2012)
Gastric cancer (incl. gastric lymphomas, GIST)
2012
Gynaecological cancers
Cervical cancer
2011
Endometrial cancer
2010
Gynaecological sarcomas
2010
Ovarian cancer
2010
Vulvar-vaginal cancer
2010
Melanoma
2007
Oesophageal cancer
2012
Pancreatic cancer
2009
Rectal cancer
Testicular cancer
2010
Non-small-cell lung carcinoma
PLANNED PUBLICATIONS
TITLE
RESULT EXPECTED IN
Quality of care of oesophageal and stomach cancer
Quality indicators: December 2012
Thyroid cancer: diagnosis and treatment
May 2012
Practice guidelines for the management of localised
December 2012
prostate cancer
Practice guidelines for the supportive treatment of cancer
October 2012
patients
Organisation of the care of rare tumours and tumours with
May 2013
a complex treatment
Innovative radiotherapeutic techniques
March 2013
Guideline for the management of colon cancer
October 2013 (update 2012)
Practice guideline for the management of lung cancer
December 2013
Practice guideline for the management of head and neck
December 2013
tumours
Table 20: National clinical practice guidelines for cancer treatment (modified from
http://www.collegeoncology.be/EN/Guidelines/). Source of the planned publications: KCE.
66
Another task of the College of Oncology is to formulate recommendations regarding the specialised
care programmes for oncology and their minimum level of activity. In 2003 the RD was published (RD
of March 2003) describing the criteria for recognition of the care programme for basic cancer care and
the care programme for oncology. These oncological care programmes focus on the diagnosis,
treatment and monitoring of cancer conditions in patients aged 16 or older. In general, a basic care
programme should cooperate with a care programme for oncology whenever this is required by the
condition of the patient. The purpose of these care programmes is to strive for high-quality and patientoriented provision of care. The diagnosis, treatment, follow-up and possible collaboration should
always take place in accordance with the guidelines and referral arrangements as noted in the
multidisciplinary oncology manual. One of the legal conditions for an oncological care programme is
participation in cancer registration. The College of Oncology is responsible for the qualitative
assessment of the oncological care programmes.
In 2012 there were 106 hospitals in Belgium with a (basic) oncological care programme. Distributed
over the various sites of the hospitals, 84 oncological care programmes and 87 basic oncological care
programmes were recognised (Figure 18).
Figure 18: Geographical distribution of the 106 hospitals with an oncological care programme and/or a
basic oncological care programme in Belgium. The dots indicate the presence of at least one hospital with
one or more (basic) oncological care programmes (Source: FPS Public Health DG1).
67
35
The measures receive a good score from the participants in the qualitative evaluation (Table 21). From
the remarks obtained via the qualitative survey, we can conclude that a care pathway must actually
contribute to an improved quality of care within reach of each patient. Also the aftercare should be
included in the care pathway (see [9;10]).
Average
Median
SD
n (%)
BC and CP
Patients
BC and CP
Patients
BC and CP
Patients
BC and CP
Patients
Measure 1
4.0
4.8
4.0
4.5
1.9
1.0
17 (65%)
6
Measure 2
4.0
4.5
3.8
5.0
2.2
1.9
14 (54%)
8
Discussion
Care trajectories optimise the continuity of the care pathway for cancer patients. To date it is not
possible to evaluate the waiting times between important milestones, such as experiencing the first
symptom and discussing this complaint with the GP or the time between the diagnosis and the start of
treatment. The central element of a care pathway is that each patient receives the best treatment, but
at present no figures are available regarding this issue. Internationally the threshold value is 80%; in
other words, a minimum of 80% of the patients for a given tumour should get the best treatment. We
can deduce the best treatment from existing guidelines. In Belgium official guidelines have been
established for 21% of the cancers, representing 54% of the patients. In addition to the official
guidelines, the recognised oncological care programmes and basic programmes must have a manual
for treatment protocols. No data are available at present about the number of manuals, nor about their
contents.
In addition to the best cancer treatment, a guideline can contain information about psychosocial
support, the expected (specific) adverse effects of the treatment and how to tackle them, the best
discharge management, and a section addressing palliative and end-of-life aspects. The existing
guidelines in Belgium do not discuss these aspects. Nevertheless, these points could contribute
significantly to ensuring the quality of life for each patient at all times.
35
68
Findings
1. Belgium has official guidelines for 21% of tumours (54% of cancer patients). In addition,
quality indicators have been developed to evaluate the quality of cancer care. Since the
launch of the Cancer Plan, noticeable moves have been made to catch up.
2. The geographic distribution of the recognised oncological care programmes appears to be
good (considering that a hospital may have several sites with a recognised OCP).
3. Accessibility to the OCPs is good (based on geographical distribution).
4. No data is available within the Cancer Centre concerning the quality of care for each type of
tumour and for each OCP. Good monitoring of the work done within the OCPs and the quality
of all OCPs is indispensable. The KCE has assessed the quality of care for particular tumours.
Oncological care programmes can call on the Cancer Registry to map their quality of care.
5. The participation of GPs (in the MOC) is limited.
69
ACTION
10:
PSYCHOSOCIAL
SUPPORT
FOR
PATIENTS
IN
ONCOLOGICAL
CARE
PROGRAMMES
This action consists of two measures, the latter of which was added in 2010.
The first measure ensures the financing of nurses, social workers and psychologists in oncological
care programmes (in operation since July 2008). Since 2010, the second measure has provided the
financing of an inter-university training programme in psycho-oncology, coordinated by the Cédric Hèle
Institute (CHI) and the Psycho-Oncology Centre (CPO).
Objectives
36
This action is intended to bring about
1. The best possible psychosocial support for each cancer patient and their close relatives.
2. Support for the best possible quality of life for each cancer patient and their close relatives.
The Cancer Plan provides in the financing of these support disciplines (i.e. 1 full-time nurse and
1 psychologist per 250 MOCs, and 1 full-time social assistant per 500 MOCs that were registered
2 years previously). Figure 19 shows the number of nurses, psychologists and social assistants
Number of financed care providers
financed from 2009 to 2011 inclusive (Figure 19).
2009
350
2010
300
2011
250
200
150
100
50
0
Nurses
Psychologists
Social assistants
Figure 19: Number of nurses, psychologists and social assistants financed per year in hospitals with a
recognised programme for cancer care. (Source: FPS Public Health figures, processed by the Cancer Centre).
36
70
In 2009
Nurse
Psychologist
Social assistant
Number of cancer patients per
283
283
563
Number of partners of cancer patients per
116
116
231
Number of children of cancer patients per
136
136
270
Table 22: Support disciplines
37
When we try to estimate the ratio of the number of nurses, psychologists and social assistants
financed to the number of cancer patients, their partners and children in Belgium in 2009, we obtain
the approximation figures listed in Table 22. Moreover, from the literature we know that approximately
38
35% of patients need psychological treatment . Based on these calculations, there should be 99
patients in need of treatment for each psychologist. The percentage of children and partners who need
support is not known. Finally, it should be noted that the psychologists also provide support to the
members of the multidisciplinary teams. The same exercise can be done for the social assistants and
nurses. However no data is available in the literature regarding the number and frequency of contacts
between patients and the social assistants or nurses.
Figure 20 shows the workload in another way, likewise without taking into account the additional
Number of financed care takers per
100,000 new cancer cases
support that psychologists provide to the cancer patient’s family and the care providers.
400
350
300
250
200
150
100
50
0
Nurses
Psychologists
Social assistants
Figure 20: Number of nurses, psychologists and social assistants financed per 100,000 new cancer cases
in Belgium in 2009 (Source: FPS Public Health figures, processed by the Cancer Centre).
In other countries the support personnel, more specifically the psychologists, are mainly financed by
NGOs (based on data from EUROCHIP work package 6 and EPAAC work package 10). It is difficult to
determine the total number of psychologists for other countries and to compare this with the situation
in Belgium.
37
Based on the incidence data of 2009, the number of psychologists, social assistants (including social nurses) and nurses
financed in 2009 and the Statbel data on 01/10/2010 (i.e. data from the end of 2009). In order to obtain a complete picture, the
prevalence data should be used, but no prevalence data was available at the time of the analyses.
38
Percentage proposed by International Psycho-Oncology Society based on scientific literature.
71
Apart from the personnel, training in psycho-oncology has also been funded in order to provide all
psychologists financed within the oncological care programmes with the necessary knowledge and
expertise. The biennial programme is organised by the Cédric Hèle Institute in Flanders and by the
Psycho-Oncology Centre in Wallonia. Since September 2010, 35 and 25 students respectively can
register for the course each year. In 2010, 1 of the 35 participants at the Cédric Hèle Institute stopped
prematurely. In the CPO, 20 out of 25 participants subsidised by the Cancer Plan finished the course
(1 participant completed the training course without the support of the Cancer Plan). At present
approximately 10% of the psychologists financed by the Cancer Plan have benefitted from training in
psycho-oncology.
On 25 November 2011 the Cédric Hèle Institute organised a symposium attended by 190 delegates.
During the meeting a Dutch translation of an American manual with guidelines for psycho-oncology
was presented. A French version will also be published later.
Patients with cancer experience a continuing need for support. Nurses play a very significant role in
this. They provide information wanted by the patient and the patents close relatives, support the
patient in the approach to and treatment of the symptoms, and provide indispensable support for the
patient.
Although many cancer patients and their close relatives in a primary cancer care trajectory are
perfectly able to cope with their experience, 25 to 50% of patients should in fact be referred to an
expert in psychosocial care. However, only 10% of all cancer patients call on professional
psychosocial support [43]. In addition (breast cancer) patients and their close relatives experience
several needs and requirements that are not met (Figure 21) [44].
72
Figure 21: Needs and requirements of breast cancer patients (2010).
More than one-third of the people who have survived cancer mentioned particular needs, mainly
concerning physical and psychological functioning. Partners expressed a need for information and
support essentially with regard to the physical and psychological functioning of the patient, followed by
needs concerning the support of the survivor, sexuality and the relationship with the survivor. Eightyseven (78) to 100% of the survivors and partners said that their need for information and support was
only partially met and sometimes not met at all [44].
39
The qualitative survey indicates that the financing of nurses and psychosocial care providers is
positively evaluated (based on the score in the question “success”) (Table 23). Better support of
patients and a greater response to individual needs is expected (see [9;10]).
Average
Measure 1
Median
SD
n (%)
BC and CP
Patients
BC and CP
Patients
BC and CP
Patients
BC and CP
Patients
5.4
5.2
5.0
6.0
1.5
1.5
20 (77%)
15
Discussion
The financing of psychologists, social assistants and nurses within the oncological care programmes is
of overriding importance. Suitable training courses are also provided for psychologists who work within
the oncological care programmes, namely a communication course and a psycho-oncology course.
The training courses must contribute to the quality of psychosocial support. No data is available for the
evaluation or follow-up of the quality of this psychosocial care.
The disciplines and their job descriptions are not defined by law. Psychologists in the oncological care
programmes and financed within the Cancer Plan are not included in the list of disciplines or health
professions and are thus by definition not included in the legislation on the practice of health
professions.
There are no guidelines in Belgium on the role of the support disciplines in cancer care. The KCE is
preparing a study on this subject.
39
73
Findings
1. Structural financing of the support disciplines in Belgium is successful. In other countries
psychologists are mainly financed by NGOs.
2. Ten per cent of the psychologists financed by the Cancer Plan have already been trained as
onco-psychologists.
3. No data is available at present to monitor and evaluate the quality of this psychosocial
support.
4. At present there is no overview of the correct use of these support disciplines. In the future an
overview of their correct use across the cancer programmes should be provided.
5. There are still no job descriptions for these support disciplines.
74
ACTION 11: FINANCING OF DATA MANAGERS IN THE CONTEXT OF THE ONCOLOGICAL
CARE PROGRAMMES
Since 1 July 2008 financing has been provided for data managers. This is intended to ensure highquality monitoring of the oncological care programmes and the results of the treatment of cancer
patients. Data managers need to register all cancer cases and follow up on the correct implementation
of the recommendations of the oncologic manual and on compliance with the treatment plan that is
discussed during the MOC.
Objectives
40
This action is intended to generate high-quality data for the cancer records.
Data managers must register all cancer cases, monitor the correct implementation of the
recommendations of the oncologic manual, and check that the MOC’s treatment plan is followed.
Since their work is indispensable for reliable data within the Cancer Registry, they should follow a
mandatory course on proper registration which is organised by the Belgian Cancer Registry. Note that
data managers not financed by the Cancer Plan are also allowed to participate in this training.
Figure 22 depicts the number of data managers financed annually by the Cancer Plan (green bars)
from 2009 to 2011, together with the number of data managers who have been trained by the Cancer
Number of datamanagers
Registry since 2000 (red line).
140
financed
120
trained
100
80
60
40
20
0
2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011
Year
Figure 22: Number of trained data managers (source: Cancer Registry) and data managers who have been
financed by the Cancer Plan, from 2009 to 2011 (Source: FPS Public Health). Data were processed by the
Cancer Centre.
40
These objectives were derived from the introductory text of each action described in the “National Cancer Plan 2008-2010 ”
(see also Evaluation of the Cancer Plan 2008-2010: Identification of a Methodology)
75
As of 1 July, 2008 hospitals are reimbursed for employing a data manager, depending on the number
of booked MOCs (RD 20 September 2009). To be reimbursed by the government, data managers
must complete a training course organised by the Belgian Cancer Registry. Before 1 July 2008 a
number of hospitals already employed data managers, but training was on a voluntary basis.
At the end of 2011 the number of trained data managers ranged from 0 to 63 per hospital (Belgian
Cancer Registry). Nineteen out of 106 hospitals with an oncologic care programme (18%) had no
trained data manager.
As mentioned above, through the clinical network hospitals have to register all new cancer diagnoses
with the Belgian Cancer Registry, regardless of whether the diagnosis is discussed in a MOC. At the
same time, pathological anatomy laboratories encode their received specimens and annually transfer
every pre-malignant and malignant diagnosis to the Belgian Cancer Registry. Subsequently, the
Belgian Cancer Registry can link the individual tumour records from clinical sources and pathological
anatomy laboratories by means of the unique patient identifier. Linkage of data from different sources
and source types ensures the completeness and reliability of the information.
Data from the Belgian Cancer Registry, combining delivery of cancer notifications by the clinical and
pathological network obtained in 2009, revealed that only 80.9% of new cancer diagnoses were
reported to the BCR via the clinical network (Table 24). The proportion of new cancer cases reported
by the clinical network was highest for breast cancer and lowest for cancers with unknown primary or
ill-defined cancer sites.
The proportion of malignant melanomas was also small, but it can be assumed that some of these
patients were treated in a private dermatology practice and were therefore only reported to the Belgian
Cancer Registry via the pathologists. Prostate cancer, the most frequent cancer in males, also
remained underreported by the clinical network.
76
Localisation
Head & neck
Digestive organs
Respiratory organs
Bones, articular cartilage, soft
tissue & Kaposi Sarcoma
Malignant melanoma
Mesothelioma
Breast
Female genital organs
Prostate
Other male genital organs
Urinary tract
Eye & central nervous system
Thyroid & other endocrine glands
Hematologic tumours (incl. MDS
and MPD)
Unknown primary and ill defined
sites
All tumours, excl. non-melanoma
Total
N
Clinical and
pathological
network
N
%
Clinical
network only
N
%
Pathological
network only
N
%
2,574
13,217
7,645
2,061
9,672
5,467
80.1
73.2
71.5
140
1122
973
5.4
8.5
12.7
373
2,423
1,205
14.5
18.3
15.8
606
375
61.9
57
9.4
174
28.7
1,912
232
9,695
3,146
8,681
400
4,053
977
952
989
166
8,457
2,486
6,032
316
2,727
673
623
51.7
71.6
87.2
79.0
69.5
79.0
67.3
68.9
65.4
270
27
277
188
317
21
318
185
86
14.1
11.6
2.9
6.0
3.7
5.3
7.8
18.9
9.0
653
39
961
472
2,332
63
1,008
119
243
34.2
16.8
9.9
15.0
26.9
15.8
24.9
12.2
25.5
5,574
2,571
46.1
1.896
34.0
1,107
19.9
959
401
41.8
134
14.0
424
44.2
60,572
43,001
71.0
6.006
9.9
11,565
19.1
Table 24: Number of tumours registered via the clinical network versus the pathology network, 2009.
MDS: myelodysplastic syndromes; MPD: myeloproliferative conditions (Belgian Cancer Registry).
An evolution of the overlap between the clinical and pathological networks between 2005 and 2009
(as shown in Table 25 for breast and prostate cancer) shows that notifications via the pathological
network declined slowly until 2008 and then dropped significantly in 2009.
Total
Clinical and
pathology
network
N
9,480
9,562
9,775
9,769
9,695
N
7,357
7,732
8,305
8,249
8,457
%
77.6
80.9
85.0
84.4
87.2
N
324
202
191
166
277
%
3.4
2.1
2.0
1.7
2.9
N
1,799
1,628
1,279
1,354
961
%
19.0
17.0
13.1
13.9
9.9
N
9,721
9,275
8,980
8,837
8,681
N
4,981
5,278
5,527
5,619
6,032
%
51.2
56.9
61.5
63.6
69.5
N
528
311
300
286
317
%
5.4
3.4
3.3
3.2
3.7
N
4,212
3,686
3,153
2,932
2,332
%
43.3
39.7
35.1
33.2
26.9
Clinical
network only
Pathology
network only
BREAST cancer
Incidence years
2005
2006
2007
2008
2009
PROSTATE CANCER
Incidence years
2005
2006
2007
2008
2009
77
Table 25: Number of tumours for breast and prostate cancer registered according to the type of network.
Source: Belgian Cancer Registry.
Today, registration of new cancer diagnoses occurs via the clinical network as well as via the
pathology network. This is intended to ensure complete and accurate cancer registration.
41
This action has been well received by the participants from the BC and CP in the qualitative evaluation
(Table 26). According to them data managers play a significant role in high-quality registration and in
the inclusion of patients in medical protocols. The patients gave a lower score, probably because they
may not be aware of the importance of data managers.
Average
Median
SD
n (%)
BC and CP
Patients
BC and CP
Patients
BC and CP
Patients
BC and CP
Patients
6.0
4.3
6.5
4.0
1.2
1.5
20 (81%)
3
Measure 1
Discussion
Data managers play an important role in high-quality cancer care. Their financing depends on the
number of MOCs registered by the hospital with the NIHDI. One full-time data manager is provided per
1,000 MOCs. The training course for data managers organised by the Belgian Cancer Registry is
intended to enable them to record the data uniformly and reliably. However, there is no formal
monitoring system for the quality and quantity of cancer registrations (audit system) handled by the
data managers.
Findings
1. In 2009 approximately 80% of cancer diagnoses were registered via the clinical network (in
the Belgian Cancer Registry).
2. Nineteen out of 106 hospitals with an oncologic care programme (18%) had no trained data
manager.
3. No quality monitoring of the data managers exists.
4. There is a large diversity in data manager profiles.
41
78
5. In the past pathological anatomy laboratories encoded their received specimens and
transferred the diagnoses to the Belgian Cancer Registry. The RD
42
of 05 December 2011
codified this collaboration by defining the obligatory exchange of data in a quality manual.
6. An effective linkage system (clinical and pathology network) has been created through which
new cancer notifications are centralised within the Belgian Cancer Registry.
42
The RD describes the accreditation standards for the anatomopathology laboratories.
79
ACTION 12: DEFINITION AND FINANCING OF A PAEDIATRIC ONCOLOGICAL CARE
PROGRAMME
This action consists of four measures. The first three measures were combined during the operational
phase:
1. Acknowledgement of the current centres for paediatric oncology (in preparation).
2. Financial support of the collaboration between centres for paediatric oncology (in preparation).
3. Implementation of an oncological care programme in paediatrics (in preparation).
4. As of 2009: financing of two additional full time equivalents (FTEs) in paramedic support for each
centre (in operation).
Objectives
43
1. Result in the best possible care for paediatric cancer patients.
2. Ensure participation in clinical trials.
The first three measures have been combined and are still in preparation. The fourth measure is up
and running.
44
At present, there are seven centres active in paediatric haematology and oncology
(Figure 23). The
current measure also supports the establishment of a scientific research unit with members from the
various centres for paediatric oncology. An RD establishing the recognition standards for the
paediatric oncological care programmes is being prepared.
81
43
Centre 1
Centre 2
105
Centre 3
Centre 4
Centre 5
105
Centre 6
22
18
Centre 7
91
Figure 23: Number of new cancer cases in 2010 in the seven Belgian centres active in paediatric
haematology and oncology. Note that these figures also include benign tumours that are not included in the
cancer incidence statistics. . For centres 4 and 5, numbers for 2009 are shown because numbers for 2010 were
not yet available Source: figures from the Belgian Cancer Registry processed by the Cancer Centre.
43
44
Five specialised centres and 2 satellite centres. An RD is being prepared.
80
Cancer is a rare disease in children aged 0 to 14. In 2009, childhood cancers comprised less than 1%
of the total cancer burden in Belgium (Belgian Cancer Registry). In all sites combined, more boys
(59%) than girls (41%) were diagnosed with cancer.
Children develop different types of cancer from adults. In the period 2004-2009 leukaemias were the
most frequent malignancies in children, followed by brain tumours and lymphoma.
According to data from the BCR, the five-year observed survival rate for children diagnosed with
cancer in Belgium in the period 2004 to 2008 was 85% (Table 27). There were significant differences
between the various subtypes. For instance, the survival rate for lymphoid leukaemia (Ia), which is the
most frequent leukaemia variant in children, had a prognosis that was almost twice as high as the
survival rate for acute myeloid leukaemia (Ib).
Childhood Cancer: 5-year observed survival
ICCC-3
I Leukaemia, myeloproliferative and myelodysplastic conditions
Ia Lymphoid leukaemia
Ib Acute non-lymphoid leukaemia
II Lymphomas and reticulo-endothelial neoplasms
III CNS and mixed intracranial and intraspinal neoplasms
IIIa Ependymoma
IIIb Astrocytoma
IIIc-IIIe Other
Total (I-XII)
Boys
5 years
OS
82%
87%
42%
95%
82%
83%
82%
83%
84%
Girls
5 years
OS
85%
90%
60%
93%
77%
80%
78%
73%
85%
OS: Observed Survival
Table 27: Childhood cancer: five-year survival in Belgium, diagnoses made in the period 2004-2008
(Belgian Cancer Registry).
No direct comparison with recent European data can be made. However, in the most recent period of
the ACCIS analysis (1988–1997) the observed overall five-year survival rate among all childhood
cancer patients was 72% [45]. According to the same ACCIS project, overall five-year survival
increased greatly during the last 30 years of the past century, from 44% for children diagnosed in the
1970s to 64% for those diagnosed in the 1980s and 74% for those diagnosed in the 1990s [46].
Considering the current experience of the existing paediatric oncology centres and the need for
financing, the implementation of paediatric haemato-oncology care programmes must ensure that
children with cancer receive specialist treatment and high-quality, individual support. Supporting the
collaboration between paediatric oncology centres will improve the quality of care and will ensure the
centre’s ability to specialise. In anticipation of the structural financing of the acknowledged care
programmes, the Cancer Plan is financing the seven Belgian centres active in paediatric haematology
and oncology.
81
45
The qualitative evaluation indicates that the implementation of paediatric care programmes is seen as
positive (based on the scores of measures 1 and 2 from members of the BC and CP and the patient
organisations; Table 28). One participant pointed out the need for following up the level of activity in
order to ensure maximum expertise.
Average
Median
SD
n (%)
BC and CP
Patients
BC and CP
Patients
BC and CP
Patients
BC and CP
Patients
Measure 1
5.3
4.6
5.3
4.0
1.7
2.0
16 (62%)
5
Measure 2
5.8
4.0
6.0
4.0
1.6
0
9 (35%)
1
Measure 3
5.2
/
5.5
/
2.2
/
9 (35%)
0
Measure 4
5.4
/
5.0
/
1.6
/
12 (46%)
0
Discussion
This action is intended to optimise paediatric cancer care. The publication of the RD concerning the
standards for recognising paediatric oncological care programmes is in preparation.
Conclusion
1. No reference or satellite centres have yet been acknowledged in Belgium. However, there are
strong collaborative links between the centres.
2. The necessary support has already been provided; the first three measures of this action are
in the final phase of preparation.
3. Monitoring the quality and the level of activity of the reference and satellite centres is required.
4. No long-term follow-up of the results and the quality of the treatment centres, or of the children
themselves, is provided. Based on literature research, approximately 30% of former childhood
cancer patients will experience moderate to severe adverse effects with a significant impact
on their functioning due to the cancer and the onerous treatment [47].
5. Presently, the BSPHO
46
and the Belgian Cancer Registry are collaborating to extend and
improve cancer registration for childhood cancer.
45
46
Belgian Society of Paediatric Haematology Oncology
82
ACTION 13: TREATMENT OF RARE TUMOURS
This action consists of 1 measure, which is defining the qualitative and quantitative criteria for the
treatment of rare tumours (in preparation).
Objectives
47
This action is intended to result in the best possible cancer care for patients with rare tumours.
The KCE planned a study to determine the threshold for defining rare cancers and cancers that
require complex treatment. A description of the Belgian situation and international experience (2011024 HSR Organisation of care for rare tumours and tumours with complex treatment) will be used to
propose new ways of organising care. The results of this study are expected in May 2013. For this
purpose the KCE is collaborating with the College of Oncology and the Belgian Cancer Registry. In the
course of 2010 the College of Oncology issued a preliminary recommendation on the qualitative and
quantitative criteria for the treatment of rare tumours.
The recent project Surveillance of Rare Cancers in Europe (RARECARE) developed a definition of
rare cancers. It defined rare cancers as cancers with an incidence lower than 6 per 100,000 population
per year, which corresponds to less than 30,000 cases per year in Europe [48]. If this definition is
applied to the Belgian cancer incidence data of 2009, it appears that a total of 188 types of cancer can
be considered as rare based on combinations of topographical and morphological characteristics, as
defined by the International Classification of Diseases for Oncology (ICD-O).
Taking into account the incidence percentage of 2009, the expected number of new cases per year
reached 8,401 or 14% of all cancer diagnoses during that year.
According to the RARECARE study, patients with rare cancers were on average younger than those
with more common cancers (Figure 24A), and the relative survival rate was worse for patients
suffering from a rare cancer (five-year relative survival rate 47%) than from a common cancer (fiveyear relative survival 65%) (Figure 24B).
47
83
Incidence rate (log scale)
A
Age group
Survival
B
Age group
Figure 24: RARECARE estimates of (A) age-related percentages and (B) relative survival per age group
for rare and common cancers in EU27 (taken from [48]).
A number of rare cancers were subject to recent KCE studies. In their report on the association
between volume and the outcome of surgical procedures [49], the KCE used Belgian administrative
data from 2004 to analyse the relationship between the number of procedures performed per hospital
or surgeon and the outcome variable mortality for two rare cancers, namely oesophageal and
48
pancreatic cancer . For pancreatic cancer surgery, the results of the KCE study were in line with
findings from the literature indicating that the results were better in high volume centres (Table 29).
48
The incidence numbers of oesophageal and pancreatic cancer in women in Belgium meet the RARECARE definition of rare
cancers (i.e. less than 6 per 100,000 per year) [48]. The incidence numbers in men range from 7.35 to 8.06/100,000 per year for
oesophageal cancer and 5.93 to 7.15/100,000 per year for pancreatic cancer (Source: Belgian Cancer Registry, data from 2005
to 2009).
84
CANCER SURGERY PROCEDURES
OESOPHAGUS
PANCREAS
ASSOCIATION BETWEEN VOLUME AND OUTCOME (TWO-YEAR MORTALITY) FOR HOSPITALS
Effects in scientific literature?
Yes
Yes
Effects on Belgian data?
No
Yes
342
309
43.8
56.1
45.4
48.2
0.89 (0.57; 1.4)
1.25 (0.83; 1.89)
b
Two-year mortality
Number of patients in analysis
a
Low hospital volume
a
High hospital volume
OR 95% CI (low versus high volume) adjusted for patient and
tumour characteristics
ASSOCIATION BETWEEN VOLUME AND OUTCOME (TWO-YEAR MORTALITY) FOR SURGEONS
Effects in scientific literature?
Effects on Belgian data?
Yes
Yes
b
Yes
46.8
58.1
41.3
43.3
1.30 (0.88; 1.91)
1.51 (1.06; 2.16)
Yes
Two-year mortality
a
Low hospital volume
a
High hospital volume
OR 95% CI (low versus high volume) adjusted for patient and
tumour characteristics
Table 29: Results of the analyses of the volume-outcome association for 2 rare cancer surgical
a
procedures (based on data from 2004 [49]). The threshold used for the removal of the oesophagus for hospitals
and surgeons is 6 interventions per year, and for the removal of a pancreas for hospitals and surgeons 11 and 6
b
interventions per year, respectively. Statistically insignificant. CI: confidence interval; OR: odds ratio.
With regard to testicular cancer, another rare cancer for which a relationship between volume and
outcome has been suggested in the scientific literature, a volume-outcome analysis has not yet been
performed with Belgian data. However, in their report on quality indicators for testicular cancer the
KCE concluded that the dispersion of care and the resulting low annual number of patients with
testicular cancer in many Belgian centres raised questions about the organisation of care for these
patients and the need to concentrate this care in a limited number of centres [42].
49
The qualitative evaluation shows that the participants awarded a good score to this action that is not
yet being performed (Table 30). This may point to the importance of this action for the participants in
the qualitative evaluation.
49
85
Average
Measure 1
Median
SD
n (%)
BC and CP
Patients
BC and CP
Patients
BC and CP
Patients
BC and CP
Patients
4.4
4.6
4.0
5.0
2.1
2.0
17 (65%)
7
Discussion
For most rare cancers we can assume that there must be a minimum level of activity to ensure the
best possible care for each patient. Guidelines should result in the use of the best treatment.
Participation in international clinical trials is very important for rare cancers.
Conclusion
1. Approximately 14% of all tumours can be categorised as a rare cancer.
2. Rare cancers occur more frequently at a younger age and have a less favourable prognosis
[48].
3. There are indications of an association between the presence of specialised multidisciplinary
teams, volume and outcome. The quality of registration is thus of vital importance.
86
ACTION 14: CERTIFICATION OF TITLE “ONCOLOGICAL NURSE”
This action consists of 1 measure, which is the certification of the title of oncological nurse. The
Ministerial Decree (MD) of 28 January 2009 describes the conditions for certifying the title “oncological
nurse” (in operation since 28 May 2009).
Objectives
50
1. Increase the attractiveness of the position.
2. Ensure the quality of care.
The number of certified oncological nurses in the Flemish and the French Communities are shown in
Number of certified nurses
in oncology
Figure 25.
700
600
500
French Community
400
Flemish Community
300
TOTAL
200
100
0
2009
2010
2011
Year
Figure 25: Number of certified oncological nurses from 2009 to 2011 in the Flemish and French
Communities. The blue line depicts the total number of certifications a year. Source: FPS Public Health, figures
processed by the Cancer Centre.
Not only nurses with a further specialisation in oncology are active in cancer care. According to the
Hospital Statistics of 2011, hospitals reported a total of 3,148 nurses that are actively involved in
oncological services. Figure 26 shows the proportion of nurses per type of degree that are working in
cancer care. Nurses with additional training in oncology represent 27% of the total nursing staff since
the start of the Cancer Plan. Considering the large variation in curriculum, the training courses for
oncology nurses in the various colleges and university require standardisation. In redesigning the
curriculum, coordination with the field of activity is recommended.
Moreover, a clear description of the tasks of oncological nurses is imperative.
50
87
8%
34%
Graduate nurse
27%
Nurses with a Bachelor's degree
Nurses with a Bachelor's degree plus oncology training
Nurses with a Bachelor's degree training in palliative care
31%
Figure 26: Proportion of different types of nurses that were active in oncological services in 2011. Source:
Hospital statistics from 2011, FPS Public Health, processed by the Cancer Centre.
51
In the qualitative evaluation this measure was well received by the participants.
The participants perceive the activity of oncology nurses as important, since their specialised skills are
essential for a qualitative cancer care. This action is also considered as recognition for the work these
nurses perform in cancer care (Table 31).
Average
Measure 1
Median
SD
n (%)
BC and CP
Patients
BC and CP
Patients
BC and CP
Patients
BC and CP
Patients
5.8
5.1
6.0
5.5
1.3
1.4
22 (85%)
12
answers for the actions that relate to their area (the number of patient organisations contacted was
66).
51
88
Discussion
About a quarter (27%) of the nurses active in cancer care hold the title of oncologic nurse. In the MD
describing the conditions for the certification of oncological nurses, no reference is made to the
number of nurses that must be preset per OCP.
Conclusion
1. Approximately a quarter of the nurses active in cancer care have obtained the title oncological
nurse.
2. Considering the large variation in curriculum, the training courses for oncology nurses in the
various colleges and university require standardisation. In redesigning the curriculum,
coordination with the field of activity is recommended.
3. A clear description of the tasks of oncological nurses is required.
89
ACTION 15: IMPROVING THE COVERAGE OF CANCER MEDICINES BY OBLIGATORY HEALTH
INSURANCE
1. The reimbursement of cancer medicines (in operation).
2. The reimbursement of medicines for breast cancer in men (in operation).
3. Improved access to medicines for ‘unmet medical needs’. This measure has been
incorporated in a new measure for faster reimbursement of particular pharmaceuticals and
therapies out of indication (in preparation).
Objectives
52
This action is intended to result in the best possible accessibility/ affordability of cancer care.
Since 2008 the NIHDI has reimbursed more than 70 new indications for cancer medication
(measure 1). The efforts for these reimbursements are ongoing.
The number of applications for the reimbursement of medicines for male breast cancer (measure 2)
remains limited since Tamoxifen is reimbursed for male breast cancer (personal communication
V. Gendreike, NIHDI, 16 May 2012). In 2009, 99 men were diagnosed with breast cancer. For breast
cancer the ratio of affected women to men is approximately 100 to 1.
At present a proposal is being prepared for the faster reimbursement of particular pharmaceuticals and
innovative therapies out of indication (measure 3). This is because access to treatments of cancer or
orphan diseases is limited and it may take a very long time before orphan or cancer drugs are
approved for reimbursement. During the research phase, only a minority of patients have access to
this treatment by participating in clinical trials, by medical emergency programmes or by
compassionate use. Accessibility to new treatments should be improved by shortening the time to
approve reimbursement. This new measure, which also falls under the activities of the Fund for Rare
Diseases and Orphan Medicines, is mainly based on the ATU model from France. This is a procedure
for a Temporary Authorisation for Use, in which people are allowed to use medicines that are not yet
approved for their category of disease.
Almost the entire population (99%) is covered by extended health insurance. As of January 2008 there
is no longer a difference in terms of coverage between the general disability insurance scheme and
the scheme applicable for self-employed persons. The latter now also covers small risks.
In the context of the Belgian European Presidency in 2010, a study was performed to analyse the
optimisation of access to innovative medicines The study concluded that a cost-benefit analysis was
necessary to investigate whether innovative medicines can be reimbursed by the government, taking
into account: relative effectiveness, cost effectiveness, budget impact analysis, medical/ therapeutic
52
90
needs, social and ethical considerations. There is no off-the-shelf method for investigating the
suboptimal or wrong use of medicines.
At present Directive 89/105/EEC of 21 December 1988 guides the EU Member States in their decision
about whether or not to reimburse the cost of (innovative) medicinal products. The explicit assessment
of cost-effectiveness and budgetary impact is however not mandatory on the EU level, and it is the
responsibility of the Member States to implement these criteria if they so choose. The evaluation
process differs in the different EU countries.
Innovative medicines are generally launched in markets where a high price can be set, and are
launched in other markets later at comparable prices. This makes it difficult for low income countries to
have affordable access to medicines. It remains to be seen whether adjustments or price
differentiation based solely on gross domestic product will suffice, and otherwise which other criteria
could be considered. Alternatively, innovative pharmaceutical drugs could be considered as a social
insurance service, which is exempt from the rules of the EU internal market [50].
53
The qualitative survey assessed the measures included the original Cancer Plan: the reimbursement
of cancer medicines (measure 1); the reimbursement of medicines for male breast cancer (measure
2); the reimbursement of Faslodex by the obligatory health insurance (measure 3), and an analysis of
the differences between Belgium and the neighbouring countries with regard to the pace, rates and
conditions for reimbursement of cancer treatments (measure 4). The results from the qualitative
evaluation indicate that the measures included in this action were positively received (Table 32).
Average
Median
SD
n (%)
BC and CP
Patients
BC and CP
Patients
BC and CP
Patients
BC and CP
Patients
Measure 1
4.7
5.6
5.0
6.0
1.9
1.4
13 (50%)
10
Measure 2
4.7
4.4
5.5
4.5
2.1
2.1
10 (39%)
8
Measure 3
6.1
6.0
7
6.0
1.4
0
9 (35%)
1
Measure 4
4.7
4.0
5.0
4.0
2.1
0
13 (50%)
2
answers for the actions that relate to their area (the number of patient organisations contacted was
66).
53
91
Discussion
The obligatory health insurance ensures that everyone who is eligible has access to medicines.
In terms of accessibility of patients to cancer medication, Belgium has an average score compared to
other European countries,
Findings
1. The reimbursement of cancer medicines must be improved.
2. The reimbursement of medicines for breast cancer in men has been improved by the
reimbursement of Tamoxifen. The effect of the costs of medicines that are not reimbursed on
the cost of male breast cancer should be investigated.
3. The possibility of an early temporary reimbursement, by which medicines are made accessible
as soon as possible, is being discussed by the NIHDI.
4. A round-table discussion needs to be organised to decide how treatments should be
reimbursed in future. New strategies should focus on treatment paths instead of promising
individual treatments. Special attention should be paid to the structure within which medicines
are used.
92
ACTION 16: SUPPORT OF RADIOTHERAPY AND MEDICAL IMAGING
1. Optimisation of the quality of radiotherapeutic services (in operation since 2010).
2. Adapted programming of the radiotherapy and medical imaging services, if necessary (in
preparation).
3. Financing within the Financial Budget (in preparation).
Objectives
54
1. Ensure the best possible care.
2. Ensure patient safety.
The quality project (measure 1) consists of 3 parts. The first part is recruiting quality managers in
radiotherapy departments. In 2010, five hospitals received financial support for this. These centres
were audited by the College of Radiotherapy in 2011. Each year the project will add five additional
services until all 25 centres of radiotherapy in Belgium are included in 2015, The second part is that
BELdART will carry out dosimetric and mechanical audits with the financial support of the FANC. The
third part is that a national database will be created to monitor incidents and near-incidents in
radiotherapy departments.
At the same time the programming of radiotherapeutic services is being evaluated and the conditions
for recognition are being revised (measure 2).
A platform has been established to devise guidelines for medical imaging and to conduct an
awareness campaign. This medical imaging platform consists of members of the FPS Public Health,
NIHDI and FANC. In recent years the radiation burden on the population has risen dramatically as the
result of increased diagnostic investigations in Belgium. The radiation burden in our country is one of
the highest in the world. The platform is working on the following practical pain-points:
•
In Belgium there are too many requests for investigations using medical imaging that do not
contribute to the clinical quality of care.
•
Patients sometimes put pressure on doctors to receive a prescription for medical imaging;
there is a need for awareness campaigns.
•
The quality of the investigations in Belgian medical imaging services can still be improved.
Guidelines have been created by representatives of the FANC, Consilium Radiologicum, Nuclear
medicine, connexists, Domus Medica, Scientific Society of General Medicine, and the Belgian
association of hospital physicists. Also a system is being developed for following up and adapting the
guidelines for proper use of medical imaging. Associated with this, an awareness campaign was set
54
93
up in 2012. A work group from the medical imaging platform is working on the development of
incentives to encourage hospitals to reduce doses.
The KCE published reports on Positron Emission Tomography (PET) in Belgium in 2005 [51] and in
2009 [52]. However, rapid advances in this area require regular monitoring.
A KCE report about innovative techniques in radiotherapy is expected in March 2013.
Measure 3 concerns the financing of a possible renewal or extension of current radiotherapy
equipment. Before looking into this financing, the College of Radiotherapy has been asked to conduct
an analysis of the current situation. The College of Radiotherapy will chart the framework and the
needs of the recognised services.
Radiotherapy is mainly focused on cancer treatments and represents one of the most used treatment
plans (about 40% of cancer patients in Belgium are given radiotherapy.
The most important objectives of the Cancer Plan with regard to radiotherapy and oncological imaging
are to ensure the quality and the availability of diagnostic and therapeutic infrastructures, thereby
taking into account the needs of the population. Coverage by obligatory health insurance is required to
make these technologies accessible to all patients. Table 33 gives an overview of the number of CT,
PET and MRI scanners in Belgium and the 3 regions in 2010.
Brussels Region
Flanders
Wallonia
BELGIUM
HOSPITAL
CT
PET
MRI
SITES
SCANNERS
SCANNERS
SCANNERS
26
105
64
195
21
68
55
144
7
13
8
28
19
51
22
92
Table 33. Number of CT, PET, and MRI devices per region in 2010. Source: hospital statistics, 2010, FPS
Public Health.
Figure 27 shows the number of acknowledged physicians active in radiotherapy from 2005 to 2010,
together with the ratio of active radiotherapists to every 100,000 new cancer patients for the period
2005 to 2009. Both the number of acknowledged physicians active in radiotherapy and the number or
ratio of active radiotherapists to every 100,000 new cancer patients have increased in recent years.
94
Number of acknowledged
physicians active in radiotherapy
660
160
650
140
640
630
120
620
100
610
80
600
60
590
40
580
20
570
0
560
2005
2006
2007
2008
2009
Number of acknowlegded
physicians active in radiotherapy
per 100,000 new cancer cases
needing radiotherapy
180
2010
Year
Number of acknowledged physicians active in radiotherapy
Number of acknowledged active radiotherapists per 100,000 new cancer cases
needing radiotherapy
Figure 27: Total number of recognised physicians active in radiotherapy from 2005 to 2010 and number of
acknowledged active radiotherapists per 100,000 new cancer cases needing radiotherapy from 2005 to
2009 in Belgium (Data source: numbers from the annual reports of the NIHDI, and cancer incidence numbers
from the Belgian Cancer Registry processed by the Cancer Centre, assuming that about 40% of cancer patients
in Belgium are given radiotherapy).
55
The results from the qualitative evaluation reveal that measure 1 was received more positively than
the other two measures by the members of the BC and CP (Table 34). It is expected that the
combination of measures 1, 2 and 3 will lead to the highest quality for the patient.
Average
Median
SD
n (%)
BC and CP
Patients
BC and CP
Patients
BC and CP
Patients
BC and CP
Patients
Measure 1
5.4
5.3
6.0
6.0
1.9
1.5
10 (39%)
6
Measure 2
3.8
5.0
4.0
6.0
2.2
1.7
9 (35%)
3
Measure 3
4.0
3.0
3.0
3.0
2.5
0
6 (23%)
1
55
95
Discussion
This action can not yet be evaluated.
With regard to medical imaging a number of initiatives have been taken. Their impact still needs to be
charted.
Findings
1. By 2015 all 25 radiotherapeutic services will have implemented a quality system.
2. Medical imaging programming is evaluated on an ongoing basis.
3. A platform has been established for medical imaging.
4. Guidelines for the appropriate usage of medical imaging have been drawn up, with the aim of
optimising the quality of the diagnosis and the applied dose.
5. An awareness campaign on the proper use of medical imaging has been devised and
launched, since continuing attention for this subject is necessary.
6. The KCE has published a report on PET scans in Belgium [52]. An earlier report was
published in 2005 [51].
96
ACTION 17: STRUCTURAL SUPPORT FOR TISSUE BANKS FOR CELL THERAPY AND UNITS
FOR CELL THERAPY WITH HAEMATOPOIETIC STEM CELLS AND UMBILICAL CORD BLOOD
This action consists of one measure that came into operation in 2011, which is the provision of
structural basic support for tissue banks for cell therapy and units for cell therapy in hospitals with
haematopoietic stem cells and umbilical cord blood.
Objectives
56
1. Ensure the accessibility of treatments.
2. Facilitate research.
Since 2011 13 accredited hospitals (12 in 2009) have received structural financial support to manage
their tissue banks with haematopoietic stem cells. Five of these hospitals also have a bank with
umbilical cord blood. The structural support consists of the financing of a database manager, a quality
coordinator and laboratory technicians, and a lump sum for storage and general costs. The human
resources are divided as indicated in Table 35.
STEM CELLS
HAEMATOPOIETIC STEM
CELLS + UMBILICAL CORD
BLOOD
0.2 FTE
1 FTE
1 FTE
0.5 FTE
0.3 FTE
2 FTE
1 FTE
1 FTE
€ 208,480
€ 351,720
HAEMATOPOIETIC
Physician-manager
Technician
Quality coordinator
Data manager
Lump sum
Total financing per bank
Table 35: Number of FTEs financed for cell banks with only haematopoietic stem cells only and for cell
banks with both haematopoietic stem cells and umbilical cord blood since 1 January 2009. Source: FPS
Public Health.
Banks with haematopoietic stem cells that have an EBMT certificate (European group for blood and
marrow transplantations) and FAMHP accreditation (the Federal Agency for Medicines and Health
Products) are eligible for this structural financing. Tissue banks with umbilical cord blood units need to
be FACT-NETCORD
57
and FAMHP accredited before they receive structural support from the Cancer
Plan.
56
The International NetCord Foundation is a non-profit association of umbilical cord blood banks, the members of which form
the largest source of umbilical cord blood for patients who need a haematopoietic stem cell transplant.
57
97
Ninety (90) to 95% of patients that need a stem cell transplant have an haematological malignancy
(such as leukaemia or lymphoma). Non-malignant diseases (such as other blood diseases and
metabolic conditions) represent a minority of the indications (respectively 2 to 4% and 0 to 4% of the
58
transplants) .
In recent years, more than 95% of patients were transplanted with an international donor. (Figure 28).
Since 2011 the effects of the 5-year recruitment campaign are becoming visible, resulting in a higher
number of Belgian donors eligible for stem cell transplantation to Belgian patients. This recruitment
campaign was established in 2008 by the Belgian Marrow Donor Programme (MDPB) and the Belgian
Red Cross with the financial support from the NIHDI. The purpose of this campaign was to revitalise
the registering of candidate stem cell donors. It has been decided to extend this campaign beyond
2013.
Percentage of Belgian patients
100%
International donors
Belgian donors
90%
80%
70%
60%
50%
40%
30%
20%
10%
0%
2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011
Year
Figure 28: Percentage of Belgian patients transplanted with a Belgian donor or a donor abroad. Source:
MDPB.
Since 2000, the number of Belgian stem cell donors (of peripheral blood stem cells (PBSC) and stem
cells from bone marrow (BM)) eligible for transplantation to a patient abroad has been decreasing, with
the lowest level being reached in 2010 (Figure 29). Together with the increase in Belgian donors for
Belgian patients in 2011 (see above), the use of Belgian donor stem cells for foreign patients has also
risen.
58
Source: personal communication with Anne Vanhonsebrouck, MDPB-R, based on figures for the period 2005-2009.
98
Number of foreign patients
transplanted with Belgian
blood
80
CBU
70
PBSC
BM
60
50
40
30
20
10
0
2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 '2011
2011
Year
Figure 29: Number of foreign patients who received a transplant from a Belgian donor. PBSC: peripheral
blood stem cells; BM: bone marrow stem cells; CBU: units of umbilical cord blood. PBSC and BM are sourced
from donors in registries. Stem cells from umbilical cord blood are collected post-partum. Source: MDPB.
Analysis of the numbers of the MDPB-R revealed that in 2008 and 2009, respectively 2.6% and 2.3%
of all Belgian patients waiting for a stem cell transplant did not find a suitable donor or CBU (Source:
personal communication Anne Vanhonsebrouck, MDPB-R). Assuming that approximately 90 to 95% of
these patients suffer from a malignant disease (see above), this means that approximately 2.4% and
2.1% of the cancer patients who needed a transplant did not find a match in 2008 and 2009,
respectively.
59
The results from the qualitative evaluation indicate that the participants are positive about this
measure (Table 36).
Average
BC and
Median
Patients
BC and CP
SD
Patients
CP
Measure 1
5.5
BC and
n (%)
Patients
CP
4.5
6.5
5.0
1.8
BC and
Patients
CP
2.6
13 (50%)
4
59
99
Discussion
Increasing numbers of donors are being recruited, enabling Belgian patients to receive blood from
Belgian donors. This will shorten the waiting time and improve treatment.
Conclusion
1. Since 2011 13 hospitals have received structural financing.
2. The number of transplants is increasing annually and it is worth noting that the number of
Belgian patients who have to rely on foreign donors continues to increase. This is ascribed to
the higher age of the donors and poor quality of HLA typing in Belgium.
3. In 2008 a recruitment campaign was undertaken to revitalise the registering of candidate stem
cell donors.
4. An interim evaluation of the recruitment campaign in 2010 pointed to good results.
100
ACTION 18: IMPROVED REIMBURSEMENT OF ADDITIONAL COSTS ASSOCIATED WITH
CANCER THERAPY
1. Better reimbursement for laryngectomised patients.
2. Better reimbursement for people who lose their hair as the result of cancer treatment.
3. Better reimbursement for people who have to undergo a breast amputation.
These three measures came into effect on 1 November 2009, 1 February 2009 and 1 December 2008
respectively.
Objectives
60
This action is intended to ensure the accessibility and/or affordability of the care.
Since 1 November 2009 the obligatory health insurance has reimbursed the safety margin of a stem
implant (€49.07) (measure 1). Because such an implant and the kit for its maintenance have to be
replaced several times a year and the costs for the delivery margin are high, the delivery margin and
the accessories of a stem implant will also be reimbursed. Figure 30 shows the registered
Number of reimbursements
of the delivery margin of
stem implants
reimbursements from November 2009 to the end of 2011.
1400
1200
1000
800
600
400
200
0
2009 (nov-dec)
2010
2011
Year
Figure 30: Number of reimbursements of the delivery margin of stem implants, from 2009 (Nov-Dec) to the
end of 2011. Source: figures from the NIHDI processed by the Cancer Centre.
People who lose their hair as the result of the cancer treatment receive a lump sum (measure 2). This
amount has been modified from 1 February 2009 as follows:
People who have become completely bald, but whose hair will grow back again, receive €180
(instead of 120 €); see Figure 31.
People with permanent hair loss as the result of radiotherapy receive a lump sum of €270
(instead of €180); see Figure 32.
A renewal of these lump sums is only possible two years after the first application.
60
101
Number of reimbursed hair
prostheses due to radio- or
chemotherapy
9000
8000
7000
6000
5000
4000
3000
2000
1000
0
2006
2007
2008
2009
2010
2011
Year
Aantal forfaits voor
haarprotheses als gevolg
van radiotherapie
Figure 31: Number of lump sums for hair prostheses for people who lost their hair temporarily due to
radiation or chemotherapy, from 2006 to 2011 inclusive. Source: figures from the NIHDI processed by the
Cancer Centre.
120
100
80
60
40
20
0
2009 (Feb-Dec)
2010
2011
Jaar
Figure 32: Number of lump sums for hair prostheses for people who lost their hair permanently due to
radiotherapy, from February 2009 to end 2011. Source: figures from the NIHDI, processed by the Cancer
Centre.
Better reimbursement of breast reconstructions, including those involving the most recent techniques,
was introduced on 1 December 2008 as described in the RD of 18 September 2008 (measure 3).
As of 1 January 2009, two additional measures are in force:
The introduction of a reimbursement for external breast prostheses in case of unilateral
agenesis (RD of 14 October 2008). Before this, reimbursement was limited to internal
prostheses only.
The introduction of a reimbursement for two external breast prostheses after amputation of the
second breast. Thanks to this action, only one application is necessary for both prostheses,
because the period for renewal coincides.
102
The issue of accessibility of care has again been highlighted by the research of Pacolet et al. and the
Flemish League Against Cancer (VLK) [53]. The research notes no significant differences between the
different regions in Belgium except for Brussels, where there seem to be considerable surpluses. This
can be explained by the potential absence of home care in Brussels. Pacolet et al. also conducted a
pilot study analysing the non-medical costs of cancer patients. Significant expenses are nonreimbursed medication, the costs of paramedics and hospitalisation insurance.
In Belgium there are a number of different insurance and reimbursement mechanisms: OMNIO status,
third party payment, MAF (maximum invoice), Flemish health insurance, etc.
In 2009 Minister Onkelinx also launched a chronic diseases plan. The purpose of the programme
61
’Priority to the chronically sick!”
is to improve accessibility and the quality of the care of chronically
sick patients.
The programme focuses on the following initiatives:
The definition of a person with a chronic disease
An efficient provision of information about chronic diseases
A simplification of the administration for people with a chronic disease
The integration of people with a chronic disease into working life and social life
Improving the accessibility of care for patients with a chronic disease
The transformation of the advisory committee of the NIHDI that is in charge of the provision of
care of the chronically ill and specific conditions into the Observatory for Chronic Diseases
Rare diseases
62
The results of the qualitative analysis indicate that the participants rate the measures of this action as
successful (Table 37). These measures contribute to an increased accessibility of care and an
improved quality of life of the patients.
Average
Median
SD
n (%)
BC and CP
Patients
BC and CP
Patients
BC and CP
Patients
BC and CP
Patients
Measure 1
6.8
5.8
7.0
6.0
0.4
1.5
9 (35%)
4
Measure 2
5.9
5.4
6.0
5.5
1.2
1.1
14 (54%)
8
Measure 3
4.7
5.8
5.0
6.0
2.1
1.3
13 (50%)
6
61
For more information about the Chronically Sick Plan please refer to the following website: http://www.lauretteonkelinx.be/articles_docs/20110330_-_SVZ_Prioriteit_aan_de_chronisch_zieken.pdf
62
103
Discussion
The measures that have been introduced are achieving their goals. However, the improved
reimbursement of breast reconstructions has not led to increased accessibility, since surgeons are
charging patients higher supplements.
The cost of cancer has been brought to our notice again by the reports of Pacolet et al. and the VLK.
Within the plan ‘Priority to the chronically sick!’ special attention is devoted to the costs. The MAF has
been reviewed in line with family income in order to limit the impact of the cost of disease beyond a
maximum sum (ceiling). The patient contribution is completely reimbursed above a certain ceiling. This
ceiling depends on the net taxable family income: the higher the income, the higher the ceiling. From
1 January 2009 this ceiling was reduced by 100 euros per family when one member of the family has
paid an individual 450 euro patient contribution for each of the two preceding calendar years. Within
the family of people who are entitled to an increased allowance, their partner and people in their care
can benefit from an additional entitlement to the social MAF. For that part of the family, the ceiling is in
principle 450 EUR.
There is extra protection for children younger than 19 years. The maximum amount is in principle
always 650 euros, regardless of the family income. This is an individual entitlement. If the child has
paid a 450 euro patient contribution individually in each of the 2 preceding calendar years, the
maximum amount is reduced to 550 euros from 1 January 2009.
The following costs are eligible:
•
patient contribution for the services of doctors, dentists, physiotherapists, nurses and other
care providers
•
patient contribution for medication in category A, B or C and for individually prepared
prescriptions (medication prepared directly by the pharmacist)
•
patient contribution for technical work done (such as operations, X-rays, lab tests, technical
investigations, etc.)
•
personal share of the day bed price in a general hospital (complete) or in a psychiatric hospital
(only the first 365 days)
•
flat rate personal share for medicines during hospitalisation
•
enteral nutrition via catheter or stoma for young people aged under 19 years
•
endoscopic and viscerosynthetic devices
•
delivery margins (supplement) for implants
The evaluation of measures taken in the context of the chronic diseases plan does not form part of the
evaluation of the Cancer Plan 2008-2010.
104
Findings
1. Since 1 November 2009 the obligatory health insurance has reimbursed stem implants.
2. People who lose their hair can make a claim at a fixed rate every two years.
3. Since 1 December 2008 there has been better reimbursement for breast reconstructions. The
improved reimbursement has however not led to increased accessibility, since surgeons have
charged patients higher supplements.
4. The accessibility of care is modified via the plan ‘Priority to the chronically sick!’
105
ACTION 19: INSTITUTE THE FUNCTIONAL REHABILITATION OF CANCER PATIENTS IN
REMISSION
This action consists of one measure, which is to start pilot projects that are intended to determine what
type of care programme for multidisciplinary rehabilitation is needed to re-integrate patients who are
recovering or are in remission into the community (in operation).
Objectives
63
1. Result in the best possible quality of life after the primary medical treatment.
2. Lower the impact of the adverse effects experienced.
Under the leadership of the University of Ghent a pilot project was launched in November 2010 to
improve the quality of life and the re-integration of women with breast cancer by means of physical
training and lifestyle management. The project started with a preparatory phase. During the
preparatory phase a manual was developed for care providers and patients. Publication of the RD (of
26 May 2012) allows this project to go ahead. The following phases of the project will investigate the
efficacy of the programme, as described in the manual, in seven hospitals initially and fifteen hospitals
later on. This is scheduled to start on 1 September 2012
Cancer and its treatment have an adverse effect on physical activity and the quality of life for many
patients. Survivors also tend to be less active than people not diagnosed with cancer. Potential
physiological and psychological benefits of physical exercise in cancer survivors may be alleviation of
cancer sequelae and enhanced returning to the health status patients had before treatment.
A recent estimate of the proportion of cured patients among European cancer patients diagnosed
between 1988 and 1999 revealed that 21% to 47% of men and 38% to 59% of women belonged to
this category [54]. If these percentages are applied to the number of Belgian cancer incidences in
2009, this would mean that between 6,878 and 15,394 men and 10,571 and 16,413 women were
cured in 2009.
A large proportion of the women who recover after breast cancer also report a variety of physical and
psychosocial consequences of the disease and the treatment [55;56]. These consequences hinder reintegration. Physical activity and exercise can play a significant role in this. To start with, physical
exercise contributes to an improved quality of life and a reduction in cancer-related tiredness [57]. In
addition, sufficient physical exercise also reduces the chance of secondary conditions (such as
secondary tumours, diabetes and cardiovascular conditions) and possibly recurrence [58;59].
63
106
64
The measure receives a higher score from patients than from members of the BC and CP (Table 38).
Those who took part in the qualitative evaluation were concerned about the availability of this action
for all cancer patients (see [9;10]). The further implementation of this action will show whether or not
that unease is justified.
Average
Measure 1
Median
SD
n (%)
BC and CP
Patients
BC and CP
Patients
BC and CP
Patients
BC and CP
Patients
3.4
5.4
4.0
6.0
1.8
1.3
13 (50%)
9
Discussion
Cancer rehabilitation is an important component of a patient’s treatment and re-integration process.
For years, organisations such as the Flemish League Against Cancer and Belgian Cancer Foundation
have been financing an oncology rehabilitation programme for cancer patients after their medical
treatment. Its added value has been proved. The pilot project, financed by the Cancer Plan, will
investigate the effectiveness of onco-rehabilitation on the quality of life of breast cancer patients in
Belgium.
Findings
1.
The rising number of cancer survivors makes effective reintegration more urgent.
2. There is a need for an oncology rehabilitation programme.
3.
A pilot cancer rehabilitation project has been running for breast cancer patients since
November 2010.
64
107
ACTION 20: DETERMINING THE CONDITIONS FOR THE RECOGNITION OF A DISABILITY
CAUSED BY CANCER TREATMENT
This action consists of one measure, which is to support an efficient application procedure for patients
disabled as a result of a cancer treatment, including (1) people being treated with chemotherapy
and/or radiotherapy with or without surgery, (2) people with a fast evolving condition and a poor short65
term prognosis, and (3) terminal patients receiving palliative care. A change of procedure
in
processing files for allowances for handicapped people was published on 19 May 2008 in the Belgian
Gazette. The rule came into effect on 1 January 2008.
Objectives
66
This action is intended to reduce to a minimum the administrative burden on patients and their
families.
The Cancer Plan wants to accelerate the application procedure for patients with an impairment as the
result of cancer treatment, including people receiving chemo or radiotherapy, people with a fast
evolving condition with a poor short-term prognosis, and terminal patients who are receiving palliative
care. Literature research indicates that following cancer treatment a reduction of up to 26% was found
in physical and mental work ability [60]. Since 1 January 2008 applications for this allowance have
been assessed only on the basis of the file itself, rather than inviting the patients for an additional
medical examination. A change in the procedure was published in the RD of 16 April 2008, which
came into force on 1 January 2008. Within this procedure the applicant can indicate whether it
concerns a priority file. Due to the enormous number of applications that are regarded as priorities,
they cannot be treated as such at present.
67
It appears from the qualitative evaluation that this action is regarded as positive (Table 39).
Average
Measure 1
Median
SD
n (%)
BC and CP
Patients
BC and CP
Patients
BC and CP
Patients
BC and CP
Patients
5.7
5.3
7.0
5.5
1.7
1.6
7 (27%)
6
65
KB of 16 April 2008 in the Belgian State Gazette on 19 May 2008.
67
66
108
Discussion
Despite the improved procedure, there are still delays in approval due to the enormous number of
applications that need priority. The department responsible (FPS Social Security, DG People with a
handicap) does not have the time to register the applications. As a result, detailed monitoring and
evaluation are not yet possible.
Findings
1. Since 2008 an accelerated procedure has been introduced for the recognition of a disability as
the result of cancer treatment,
2. Since the vast majority of the applicants indicate that theirs is a priority file, this influx cannot
effectively be treated as a priority.
109
ACTION 21-22: SUPPORT FOR PARENTS OF CHILDREN WITH CANCER AND ACCESS TO
PSYCHOLOGICAL SUPPORT OR PARTICIPATION IN SELF-HEP GROUPS
This action is a combination of action 21 and action 22 from the original Cancer Plan 2008-2010. Both
actions consist of a call for projects (launched in June 2008) to stimulate the psychosocial support of
patients in oncological care programmes and their relatives.
Objectives
68
1. Ensure the best possible psychosocial support.
2. Result in a better quality of life for cancer patients and their relatives.
3. Facilitate psychosocial research in oncology.
Hospitals submitted a total of 58 projects. Fifty (50) have been selected and supported financially
between 1 January 2009 and 31 December 2011
(http://www.health.belgium.be/eportal/Myhealth/Risksanddiseases/Healthrisks/Cancer/index.htm).
They include projects for a variety of target groups: cancer patients (adults or children) and their
families (children, parents, spouses). The subsided projects can be divided into three categories:
Establishing a meeting place.
Arranging conversation groups.
Specific projects, such as the individual support of the relatives of patients in relapse
or foreign patients, organising school visits for sick children, extending or optimising
multidisciplinary mentoring, research projects, etc.
A scientific team, which was selected by the FPS Public Health (Cancer Plan unit) in 2012, will
evaluate the projects. With the introduction of advisory committees an attempt has also been made to
encourage the exchange of information within the different cancer services. The evaluation of these
pilot projects is essential to determine a long-term vision regarding health policy. Finally the CHI and
CPO received additional financing to hold an annual congress in the context of psycho-oncology
training to encourage best practice in the different care programmes.
A study conducted by Pauwels et al. in breast cancer patients indicated that the survivor’s
psychological stress level is crucial in determining the type of care [61]. This implies that screening the
patient’s general well-being can reveal who needs help and who does not. The results emphasise the
differences in adaptability among survivors of breast cancer. Research intended to facilitate
psychosocial support not only results in innovation, but may also enhance care for patients and their
68
110
relatives. Surveys, similar to those conducted by Pauwels et al., could be developed to determine the
stress level in other types of cancer patients.
69
The qualitative evaluation demonstrates that these actions are positively received (see [9;10]).
Furthermore, it appears that the actions promoting innovation and the development of best practices
are also viewed positively. On the one hand these actions support psychosocial care and on the other
hand they extend research into psychosocial cancer care (Table 40).
Average
Median
SD
n (%)
BC and CP
Patients
BC and CP
Patients
BC and CP
Patients
BC and CP
Patients
Action 21
5.5
6.6
5.8
7.0
1.5
0.6
12 (46%)
6
Action 22
5.2
5.5
5.5
6.0
1.7
1.9
18 (69%)
8
Table 40: Scoring on the question ‘success’ of actions 21-22 (maximum score = 7).
Discussion
Cancer patients and their families suffer from a lot of distress. The financed pilot projects are expected
to contribute to the identification of the best possible way to meet these needs within the existing
oncological care programmes. The financing contributes to the development of high-quality cancer
care within the hospital walls. At present no data is available for evaluating the quality or the impact of
the pilot projects.
Findings
1. Between 2009 and 2011 50 projects received financing.
2. Evaluation of the pilot projects will be performed by a scientific team, financed from 1 July 2012.
69
111
ACTION 23: STRUCTURAL FINANCING OF THE CHAIN OF PAEDIATRIC CARE ‘CONTINUED
CARE FOR CHILDREN’
This action consists of one measure that provides structural financing for five multidisciplinary liaison
teams based on the recognition standards of the RD of 15 November 2010. On the one hand these
teams support the hospital team by caring for young hospitalised cancer patients with a severe chronic
disorder, and on the other hand they ensure the continuity of care after hospitalisation (in operation
since 2010).
Objectives
70
This action is intended to ensure the best possible care for patients and their relatives.
To ensure the continued care of children with cancer, the FPS Public Health is financing five liaison
teams (Table 41). The accreditation terms of these teams are described in the RD of 15 November
2010. The liaison function is intended for patients younger than 16 who are suffering from a severe
chronic disorder. These teams provide continuous care and treatment in the hospital and at home, if
they care is still need. The treatment may be of curative, palliative or terminal nature.
The minimum team comprises:
50% physician, specialised in paediatrics and with experience in pain control;
4 100% nurses, at least one of whom is specialised in paediatrics and neonatology;
50% psychologist;
50% administrative personnel.
One physician and one nurse must always be on call. The tasks of the liaison team can be
summarised as follows:
To encourage communication between the hospital team and primary care.
To ensure the continuity of treatment when the patient leaves hospital and receives care at
home, or vice versa.
To provide information about the functions of the team.
To advise the care providers and hospital management about the liaison team.
70
112
BELGIAN HOSPITALS WITH A PAEDIATRIC LIAISON TEAM
UZ Ghent
UZ Leuven
CHR de la Citadelle
Cliniques Universitaires St-Luc
Hôpital Universitaire des Enfants Reine Fabiola
Table 41: Belgian hospitals with a paediatric liaison team. Source: FPS Public Health, 2010.
The discussion of action 12 also presents the incidence, mortality and survival figures for childhood
cancers. According to data from the Belgian Cancer Registry, the five-year survival rate for children in
Belgium diagnosed with cancer between 2004 and 2008 was 85%. Of course there are significant
differences between the different subtypes. For instance, the survival rate for lymphoid leukaemia (Ia),
which is the most frequent leukaemia variant in children, had a prognosis that was almost twice as
high as the survival rate for acute myeloid leukaemia (Ib).
71
The participants in the qualitative evaluation evaluate this action as positive (Table 42). Nevertheless,
more attention should be given to intra-extramural collaboration (see [9;10]).
Average
Measure 1
Median
SD
n (%)
BC and CP
Patients
BC and CP
Patients
BC and CP
Patients
BC and CP
Patients
5.1
4.8
5.5
5.5
1.7
1.9
11 (42%)
4
answers about actions related to their area (the number of patient organisations contacted was 66).
Discussion
The liaison teams support the children and their families during long-term care. They try to ensure the
best possible quality of life for each child and their family. At present, little data is available to measure
the impact of this action. The participants in the qualitative evaluation point to transmural collaboration
as a point for attention. In 2009 a retrospective cross-sectional study was conducted to evaluate the
support supplied by the liaison team of the Leuven University Hospital with regard to aspects of care
and aftercare, communication, the child’s symptoms, place of decease, the support delivered by the
71
113
liaison team, and experience with the care provided. The results of this study indicated that palliative
home care was related to high levels of satisfaction amongst bereaved parents. From the parents’
perspective, the care model of the liaison team of the Leuven University Hospital met the crucial goals
of high-quality palliative paediatric care. However, the involvement of psychologists could be
improved, as well as bereavement care [62].
Findings
1. Five multidisciplinary teams receive structural financing to support their activities.
2. The composition and tasks of these teams are well defined.
3. Little data is available about the impact of this form of support on the quality of life and/or
patient satisfaction.
114
ACTION 24: SUPPORT FOR PILOT PROJECTS IN CLINICAL ONCOGERIATRICS
This action consists of a call for projects (launched in June 2008) focusing on oncological care
programmes with the aim of optimising the admission of older cancer patients and with the prospect of
establishing specialised teams in clinical oncogeriatrics in the future.
Objectives
72
1. Ensure the best possible oncogeriatric cancer care.
2. Facilitate research into oncogeriatrics.
In June 2008 a call for projects was launched, focusing on care programmes in oncology, with the aim
of optimising the care of older cancer patients and establishing specialised teams in clinical
oncogeriatrics later on. Hospitals submitted a total of 27 projects. Fifteen (15) of these were selected
and subsequently financed between 2009 and 2010. The funding of 14 of these projects was
continued in 2011. A scientific team, selected by the FPS Public Health in 2012, will evaluate the
projects.
At present approximately 13% of the Belgian population is 70 years of age or older. By the year 2020,
the total number of inhabitants in the age group 70+ will rise by approximately 200,000, resulting in an
increased need for specialised oncological care for patients in this age group (Table 43).
Prognosis of the Belgian population by age group
Belgium
2010
2015
2020
Age group 0-69
9,418,881
9,771,634
9,957,224
Age group 70+
1,388,515
1,428,122
1,581,108
Total
10,807,396 11,199,756 11,538,332
Table 43: Prognoses of the Belgian population per age group. Source: 2000-2007: ADSEI perceptions; 20082061: Population projections 2007-2060, FPB-ADSEI (www.plan.be).
Data from the BCR with regard to the incidence of invasive cancers in patients 70 years and older in
the Flemish Region revealed a 36% increase in the total number of new diagnoses between 1999 and
2009 (Figure 33). The age standardised incidence for the same period showed only a slight increase,
indicating that the main reason for the increasing number of new diagnoses was ageing.
72
115
N (Number)
3500
30000
3000
25000
2500
20000
2000
15000
1500
10000
1000
5000
500
0
WSR (N/100,000)
35000
0
1999
2000
2001
2002
2003
2004
2005
2006
2007
2008
2009
2020
Year
Total (N)
WSR (N/100,000)
Figure 33: Number of new diagnoses (N) and the age-standardised incidence (WSR) of invasive cancers
within the age group of 70 years and older in the Flemish Region during the period 1999-2009 with
predictions up to 2020. Source: Belgian Cancer Registry.
In 2009, the Belgian Cancer Registry registered 27,424 new cancer diagnoses in Belgian patients in
the age group 70+ (45.3% of the total number of new cancer diagnoses). The absolute number of new
diagnoses in patients aged 70 years and older is expected to rise to 31,000 in 2020 and to 48,500 in
2050 (Figure 34). More specifically, the proportion of patients aged 85 years and older is expected to
increase from 6.8% in 2009 to 8.4% in 2020
116
A
70-74 (14.3%)
75-79 (13.8%)
0-69
54.7%
70+
45.3%
80-84 (10.3%)
85-89 (5.5%)
90-94 (1.0%)
95+ (0.3%)
B
70-74 (15.3%)
75-79 (11.3%)
0-69
55.3%
70+
44.7%
80-84 (9.7%)
85-89 (6.1%)
90-94 (1.9%)
95+ (0.4%)
Figure 34: Distribution of invasive cancers by age (A) in 2009 and (B) in 2020, according to a prognosis
made by the Belgian Cancer Registry.
According to the EUROCARE II study on survival rates in elderly cancer patients in Europe, the
survival probabilities of the elderly (in particular older women) are worse that those of younger adults.
This can be ascribed to a variety of factors, such as the nature of the tumour and the stage at
diagnosis, a weaker general condition, comorbidity, and the use of less aggressive therapies [63]
An important factor in the prognosis is the difference in stage distribution at the time of diagnosis. As
shown in Figure 35, elderly Belgian patients who were diagnosed in 2009 with breast cancer or
colorectal cancer were more often diagnosed in prognostically less favourable stages. Moreover, an
age-related increase can be observed in the proportion of diagnoses without information about the
stage (stage X, Figure 36).
117
Percentage of breast cancer
with known stages
A
100
90
80
70
60
50
40
30
20
10
0
n = 2.609
70+
n = 6.122
0-69
Age Groups
I
B
II
III
IV
100
Percentage of colorectal cancer
with known stages in females
90
80
70
60
50
40
30
20
10
0
n = 1.194
0-69
n = 1.958
70+
Age Groups
I
Percentage of colorectal cancer
with known stages in males
C
II
III
IV
100
90
80
70
60
50
40
30
20
10
0
n = 1.710
0-69
n = 2.137
70+
Age Groups
I
II
III
IV
Figure 35: Incidence of breast and colorectal cancer per stage and age group in Belgium in 2009. (A)
Breast cancer in females, (B) colorectal cancer in females and (C) colorectal cancer in males. Only cancers with
known stages (I-IV) are taken into account; cancers with an unknown stage make up for (A) 7 to 13%, for (B) 12%
118
and for (C) 11 to 12% of all cancers (known and unknown stages together) per age group (Belgian Cancer
Registry).
Proportion of breast
tumours with unknown
stage (%)
A
100
90
80
70
60
50
40
30
20
10
0
Stage unknown
Known stages
0-49
50-59
60-69
70-79
80-89
90+
Age Groups
Proportion of colorectal
tumours with unknown
stage (%)
B
100
90
80
70
60
50
40
Stage unknown
30
20
Known stages
10
0
0-49
50-59
60-69
70-79
80-89
90+
Age Groups
Figure 36: Proportion of tumours with an unknown stage (X) in Belgium in 2009. (A) Breast cancer and (B)
colorectal cancer. Source: Belgian Cancer Registry.
As the result of the ageing of the population and accompanying increases in new diagnoses of cancer,
the health care sector must be prepared for increased needs within cancer care. Instruments for
geriatric evaluation should therefore be defined and validated, recommendations should be formulated
for the care of older patients, and the composition of the most suitable multidisciplinary teams for this
specific care should be specified.
73
This action is received positively by the stakeholders (Table 44). There is insistence upon a
comparison between the ongoing projects and the usual care. It is expected that this action will also
lead to an effective improvement in care for this target group.
73
119
Average
Median
SD
n (%)
BC and CP
Patients
BC and CP
Patients
BC and CP
Patients
BC and CP
Patients
4.9
4.3
5.0
4.0
1.8
1.5
15 (58%)
3
Measure 1
Discussion
Due to the ageing of our population, the importance of oncogeriatrics can only increase. One of the
most important challenges is to deal with the comorbidity and/or multimorbidity with which most of the
oncogeriatric patients have to cope. This has to be considered when selecting the best treatment
option. Another key element in this selection process is the determination of the resilience of an
oncogeriatric patient and the patient’s family. The GP plays a significant role in this process, since the
GP has usually known the patient for a long time and is in a better position to estimate what the patient
can handle. Among other things, identification of risk factors, such as the patient’s cognitive
functioning and nutritional status, is essential in this evaluation. Collaboration between the geriatric
teams and the extramural care is therefore essential.
Findings
1. Fifteen (15) pilot projects were financed from 2009 to 2010. For 14 of the ongoing projects the
financing was extended by 1 year in 2011.
2. From 1 July 2012 a scientific team is being financed that is responsible for evaluating the
previous pilot projects (2009-2011) and for the scientific support, mentoring and evaluation of
the current projects (2012-2015).
3. Due to the ageing of the population, approximately 4,000 new cancer cases are expected in
2020 (absolute numbers).
4. The proportion of cancer patients aged over 85 is expected to increase from 6.8% in 2009 to
8.4% in 2020.
5. Prostate, breast and colorectal cancer are the most frequent types of tumours in these age
groups.
6. The survival rate of elderly people after cancer is worse than with people in other age groups,
regardless of the type of tumour [63]. Women in particular have a lower survival probability.
7. There is a need for instruments for making efficient onco-geriatric assessments.
8. Attention should be paid to the problem of multimorbidity in the elderly.
120
ACTION 25: IMPROVE THE AVAILABILITY OF PALLIATIVE CARE FOR CANCER PATIENTS
This action consists of four measures:
1. A study of the needs in palliative care.
2.
Strengthening palliative care support in homes for the elderly and nursing homes.
3. Re-evaluation of the lump sum for palliative home care.
4. Developing palliative day care centres.
The first three measures are ongoing (measure 2 started on 1 July 2008 and measure 3 on 1 March
2009) or complete (measure 1). The fourth measure was performed in the form of pilot projects. The
publication of recognition standards for the fourth measure is being prepared.
Objectives
74
This action is intended to result in the best possible palliative care.
Evaluation of the implementation and impact of this action
In 2009, the KCE performed an extensive study of the organisation of palliative care in Belgium by
means of a systematic literature review, and an analysis of the prevalence of palliative care and of the
perception and experience of GPs with palliative care in Belgium (measure 1). In addition, a pilot study
was performed to estimate the costs of palliative care [64].
The current policy in Belgium relies on a definition based on the patient’s prognosis. However, the
literature and surveys clearly show that life prognosis does not identify patients with palliative care
needs because the prognosis is often inaccurate, especially when it is long and in the case of
diseases other than cancer.
In 2008 an estimate was made of the number of Belgian patients who were potential candidates for
palliative care, regardless of their prognosis and the care they were receiving. Between 10,000 and
20,000 patients in Belgium were regarded as palliative by their health care professional. However, only
400 beds are available in palliative care units. There is thus a growing need for care givers who can
provide the best palliative care for patients, staying either at home or in a home replacement setting.
The KCE also analysed the patients’ expectations with regard to palliative care and preferred place of
death, and found that most patients were able to die where they wanted if the main caregiver was
aware of their wishes. Most palliative patients preferred to die at home or in home replacement
settings. According to a recent study on end-of-life care and the circumstances of cancer patients’
death in Belgium, 34% of deaths occurred at home and 29% in a hospital [65]. In 43% of cases endof-life preferences were known.
The KCE study further revealed that hospital physicians and GPs ignored the patients’ wishes
concerning their treatment options in about one-quarter of the cases, which again points to the
importance of optimal communication between the lines of care to identify the patient’s expectations.
In home and home replacement settings, the treatment options planned by the health professionals
were mostly followed. The definition of the treatment’s goal was essential for the treatment decision74
121
making, but the physicians pointed out a grey area between curative and palliative care, as well as the
potential evolution in the patient’s wishes.
The KCE pilot study into the costs of palliative care also revealed that in the home setting the median
monthly costs were higher than 1,500 euros. This is 3 times as much as the lump sum paid by the
NIHDI. Informal care, support by social services and nourishment were the most expensive items.
Cost estimates of palliative care in nursing homes pointed to the definite role of hospitalisations and
further emphasised the role of palliative care in decreasing hospitalisation costs. Patients without
palliative care incurred significantly higher costs than residents with palliative care, due to the higher
costs of hospitalisation.
To provide palliative care staff in homes for the elderly and nursing homes, extra help of 0.1 FTE per
30 highly-dependent patients has been provided since 1 July 2008
75
(measure 2).
Non-hospitalised patients who prefer home care at the end of their life are entitled to financial support
(measure 3). Several lump sums may be requested to pay for specialised care at home. Palliative
home care can relieve the families of a terminal patient, certainly if they are still working. In this context
the lump sum for palliative homecare has been evaluated again and increased by 15% (from € 512.44
to € 589.31). For 2012 this sum has been set at € 621.15 per month. This lump sum is exclusively
intended for patients with an irreversible condition who are deteriorating and who are expected to die
soon. They need permanent care and support in their home environment. The lump sum is paid for
one month, but can be extended by an additional month if the patient continues to meet the conditions.
76
It can also be combined with the lump sum for care, incontinence and the PVS benefit . Figure 37
shows the number of registered lump sums from 2006 to 2011.
Number of forfeits for
palliative home care
25.000
20.000
15.000
10.000
5.000
0
2006
2007
2008
2009
Year
2010
2011
Figure 37: Number of registered lump sums for palliative home care from 2006 to 2011. Source: NIHDI,
figures processed by the Cancer Centre.
Since 2009 the Cancer Plan has supported the financing of six pilot projects (five in Flanders and one
in Wallonia) for day care of palliative patients (measure 4). However, publication of the recognition
standards of this measure is still being prepared.
75
76
MD 4/7/2008
This lum sum is intended for patients in a persistent vegetative state.
122
77
The measures of action 25 are positively evaluated (see [9;10]). Reservations are expressed about
measure 4, extending structures for palliative day care outside the hospital or the rest home
(Table 45).
Average
Median
n (%)
SD
BC and CP
Patients
BC and CP
Patients
BC and CP
Patients
BC and CP
Patients
Measure 1
5.0
4.6
5.0
5.0
1.5
1.1
13 (50%)
5
Measure 2
4.9
4.7
5.5
5.0
2.0
1.5
11 (42%)
3
Measure 3
5.7
5.5
6.0
5.5
1.6
0.7
12 (46%)
2
Measure 4
3.9
4.8
3.5
5.0
2.3
1.5
15 (58%)
4
Table 45: Scoring on the question ‘success’ of action 25 (maximum score = 7)
Discussion
The measures have been carried out, albeit the fourth measure in the form of a pilot project. The
Federal Evaluation Cell for Palliative Care (see later) is elaborating some proposals.
Palliative care is an integral part of cancer care. The figures on cancer mortality in Belgium indicate
that a large number of patients do not receive a curative treatment, but rather a treatment intended to
prolong life and/or maintain the best possible quality of life. Due to the ageing of the population, we
may assume that this group of patients will only increase.
However, the definition of palliative patients and their legal status with regard to health care is unclear
at present. This has an impact on the use of the services within health care provided to palliative
patients. Ideally, a definition would take into account the variation and progression with regard to the
needs and the variable length of time for which care may be needed.
In addition, other actions may also have a direct impact on the management of pain and palliative
care, such as the financing of personnel (nurses and paramedical staff) as a result of action 10 and
the various types of MOC that have been established (action 8).
Finally one should take into account the existing palliative home care teams. These teams are not
supported by the Cancer Plan 2008-2010, but are essential in our palliative care. They consist of
palliative nurses who support and assist the patient, their families and even care providers at home or
in home replacement settings.
Multidisciplinary support teams were established by a RD in 1999 and are financed by the NIHDI.
Their support is free for both families and care providers. By providing 24-hour service, seven days a
77
123
week, the palliative team aims to provide maximum support for those patients who wish to spend the
last phase of their life at home and die at home. Anyone who is involved in a patient’s palliative care
can request the support of a palliative home care team. However, the team only provides support with
the agreement of the GP.
Other palliative patients reside in nursing homes where they can call on specialised palliative care
providers. In a number of hospitals special wards are dedicated to palliative care (palliative care units),
but palliative patients outside these wards can also call on palliative support teams within the hospital.
The main focus of the palliative support teams is to support fellow care givers, thereby using their
expertise in pain and symptom control to help deal with (emotionally or ethically) difficult situations.
The palliative experts do not provide the care themselves, but assist their colleagues in a
complementary and advisory way. A second objective is to support patients and their families by
optimising comfort, psycho-social support and care in order to ensure the patient’s emotional,
existential and spiritual well-being. All care that is offered is individualised. Palliative teams do not
impose care, but only provide help and listen to specific questions.
The Federal Evaluation Cell for Palliative Care is part of the FPS Public Health. This Evaluation Cell
must submit a report illustrating the needs of palliative care every two years. The cell met five times in
2011 on the following subjects: the definition of the palliative patient, the agreement of the definition
with the current regulations, continuity and transmural palliative care, the registration of palliative care,
and charting the allocation of Sp-beds
78
for palliative care. The Federal Palliative Care Evaluation Cell
finalised its report in the spring of 2012.
Findings
1. The KCE published a study on needs within palliative care.
•
The definition of a palliative patient should be based on needs rather than on life
expectancy.
•
The palliative support teams are not fully utilised.
•
The training of care providers and individualised care by multidisciplinary teams are
crucial for high quality palliative care.
2. Palliative care within homes for the elderly and nursing homes has been strengthened by
adding 0.1 FTE per 30 severely dependent people.
3. The lump sum for care has been increased in palliative home care.
4. Pilot projects for palliative day care centres have been financed, but they need further
analysis.
5. The definition of a palliative patient is not yet attuned to the needs of the patients.
6. A variety of care models are available.
7. Most people died where they wanted to die if their preference was known by the main
caregiver. In less than half of the cases end-of-life treatment preferences were known. Figures
from recent research suggest that 34% of deaths occurred at home and 29% at the hospital.
78
Beds in a specialised hospital ward
124
8. The Federal Evaluation Cell for Palliative Care (FPS Public Health) is developing
recommendations.
125
ACTION 26: INITIATIVES IN CONSULTATION WITH THE AUTHORISED FEDERAL MINISTERS
1. Improvement of the combination of work and cancer for the patient (in preparation).
2. Improvement of the combination of work and cancer for parents (in preparation).
3. A simplified and customised procedure for the fiscal deductibility of donations (in operation since
2008).
Objectives
79
1. Support informal caregivers.
2. Facilitate integration into work.
The first two measures are still in preparation. The first step is to put them on the agenda of the
National Labour Council. The last measure has been implemented. The procedure regarding taxdeductible donations was simplified and modified, so that the organisations can fully benefit as
beneficiaries. As a result of indexing, the minimum amount eligible for tax deduction increased from
€30 to €40 on 1 January 2011 The first two measures need to be further elaborated with the
authorised Ministers of Labour. Social Affairs and Public Health.
Literature research reveals that the percentage of patients who returned to work 6 months after
diagnosis, or who continued working during the cancer treatment, amounts to approximately 40%.
Reintegration depends both on personal factors and work-related (or employer-related) factors. For
example, return to the workplace appears to be inversely related to the age of the patient [60].
The diagnosis of cancer not only affects health, but also has an impact on other aspects of daily life.
Therefore the Cancer Plan also contains initiatives in collaboration with other Federal public services.
Health is after all affected by policy in other sectors, and in turn health has significant effects on the
achievement of objectives in other sectors, such as economic wealth. Figure 38 shows the factors,
also called determinants, that have the greatest impact on health. In 2006 the European Observatory
on Health Systems and Policies introduced its strategy Health in All Policies to help strengthening the
bond between health and other policy areas. Their book Health in All Policies: Prospects and
potentials discusses effects on health within all policy sectors, such as agriculture, education,
environment, the tax system, housing and transport [66]. The ultimate objective is to improve health
and at the same time contribute to the well-being and the wealth of the nations using structures,
mechanisms and actions that are mainly planned and coordinated by sectors other than the health
sector.
79
126
Figure 38: Determinants of health (taken from [66]).
80
Compared to the members of the BC and the CP, the patients give higher scores to this action
(Table 46). This evaluation shows that the stakeholders expect more flexibility with regard to
alternating periods of work and inability to work (see [9;10]). Patients indicate that they expect the
measure to be developed in line with the results of the UN conference of 13 December 2006 on the
rights of people with a disability. In the evaluation of measure 2, improving the combination of work
and cancer for the parents of cancer patients, the importance of abandoning time limitations and reevaluating the loss of income was emphasized.
Average
Median
SD
n (%)
BC and CP
Patients
BC and CP
Patients
BC and CP
Patients
BC and CP
Patients
Measure 1
2.9
4.0
2.0
4.0
2.3
1.9
10 (39%)
7
Measure 2
3.4
4.7
3.5
4.5
2.3
1.6
10 (39%)
6
Measure 3
4.4
3.8
4.5
4.0
2.1
1.5
8 (31%)
6
Discussion
Not every measure within this action has been carried out. Figures regarding the influence of cancer
on professional life and how informal caregivers modify their work schedule are not available.
Nevertheless, the combination of work and cancer is a significant aspect of cancer care.
80
127
Minister Onkelinx requested the committee of the reimbursements department of the NIHDI to develop
a series of measures to ameliorate the socio-economic integration of chronically ill patients and people
with a disability. The proposals developed by the committee were transformed into the action plan
‘Back to Work’, which accounts for up 13 million euros of the national budget. This action plan consists
of measures intended to stimulate return to work on a part-time basis, measures that ensure an
education, and proposals to improve the quality of medical evaluations.
Findings
1. Collaboration with other ministries is necessary. In Health in All Policies the European
Observatory on Health Systems and Policies puts forward its strategy to strengthen the
connection between health and the other policy sectors.
2. A simplified way of declaring donations has been introduced.
3. Only limited progress has been made regarding the combination of work and cancer.
128
DOMAIN 3: RESEARCH, INNOVATION AND EVALUATION
ACTION 27: ESTABLISHING A TUMOUR BANK
This action provides structural financing for the existing tumour banks of university hospitals and
hospitals that are financed for new technologies (in operation since 1 January 2009).
Objectives
81
1. Facilitate research.
2. Result in the optimum effectiveness of treatment.
82
Eleven tumour banks comply with the required standards . The hospitals involved donate 10% of the
sum received to the Belgian Cancer Registry as a contribution to the cost of running the virtual
coordinating tumour bank (Figure 39). This project chiefly consists of centralising the data from the
local databases and developing standard procedures.
Figure 39: Current partners within the Belgian virtual tumour bank network (data source: Belgian Cancer
Registry, 2011)
Additional information about the Belgian tumour bank can be found at www.virtualtumourbank.be.
81
82
KB of 20 September 2009
129
The tumour banks and the virtual tumour bank facilitate research, which benefits the treatment of
patients. The Act of 19 December 2008 regarding human tissues and cells specifies that residual
tissue (human tissue that is left over after all the necessary diagnostic tests have been performed, and
hence would be discarded) can be stored in a biobank and used for scientific research (assuming the
patient has given consent). A patient must be informed about the potential use of residual tissue for
scientific research and may oppose this use. A suitable portion of the human tissue is retained in case
the patient may need it. The hospital’s ethics committee monitors the correct use of the material.
Human tissue, such as a tumour that has been removed, is primarily used for the diagnosis and
treatment of the patient. Residual tissue, however, is of inestimable value to researchers. By making it
available, patients can contribute to the fight against cancer. Biobanks are mainly important for
translational research, in which the primary aim is to translate the findings of basic scientific research
into therapeutic applications, such as new treatments or medicines, as quickly and efficiently as
possible.
83
The results from the qualitative evaluation indicate that the members of the BC and CP welcomed the
establishment of the virtual tumour bank even though few guarantees have been identified for the
centralisation of the data, as originally envisaged by this action (see [9;10]). No scores are available
from participants from the patient organisations (Table 47).
Average
Median
SD
n (%)
BC and CP
Patients
BC and CP
Patients
BC and CP
Patients
BC and CP
Patients
Measure 1
5.7
/
6.5
/
1.8
/
15 (58%)
0
Measure 2
5.0
/
5.0
/
1.9
/
13 (50%)
0
83
130
Discussion
The FPS Public Health offers financial support to eleven tumour banks. In addition the Flemish
Community has conceived a plan to finance the existing Flemish biobanks. To this end the Centre for
84
Medical Innovation (CMI) was established . The intention is to improve the coordination of the existing
activities of research institutions, hospitals and companies and to achieve the scale necessary for
carrying out statistically relevant research. The CMI also wants to establish standardised digital
structures within the various biobanks and to develop uniform procedures with regard to data
processing, quality care and ethical agreements.
The Walloon Community is considering a similar initiative (Biowin).
No data is available to chart the impact of these two financing initiatives on the intended objective.
Findings
1. The Belgian virtual tumour bank will support research by making tumour tissues available.
2. The hospitals’ tumour banks will provide the input for the virtual tumour bank.
3. The virtual tumour bank is available via www.tumorbank.be.
84
Flemish Council for Science and Innovation, opinion 120: resources for biobank infrastructure.
131
ACTION 28: STRUCTURAL FINANCING OF THE COORDINATION OF TRANSLATIONAL
RESEARCH IN HOSPITALS
ACTION 29: SUPPORT FOR TRANSLATIONAL RESEARCH
These actions provide structural financing of university hospitals, and of hospitals that are financed for
new technologies, with extensive expertise in the area of translational research (in operation since
1 January 2009).
Objectives
85
These actions are intended to:
1. Facilitate translational research.
2. Ensure accessibility to innovative forms of treatment.
Seven hospitals benefit from structural financing. To better adjust treatments to the target group and to
stimulate the search for new diagnostic and therapeutic targets, a call for projects in translational
oncology research was launched in June 2008. Of the 61 projects submitted, 29 were selected after a
thorough evaluation by an independent (inter)national jury
(http://www.health.belgium.be/eportal/Myhealth/Risksanddiseases/Healthrisks/Cancer/index.htm).
These projects received financial support between 1 January 2009 and December 2011. The study
subjects can be roughly divided into three broad topics:
Genetic characteristics;
The identification and/or validation of biomarkers;
The use and implementation of functional imaging techniques.
A number of different definitions and descriptions for the term ‘translational research’ are in use, with
several common characteristics. Translational research is the link between fundamental research,
which is of prime importance for any form of progress, and clinical research, which focuses on
patients. The purpose of translational research is to find practical applications for recent discoveries in
fundamental research. Translational research aims to rapidly translate knowledge and innovative
technologies into practical applications, diagnoses and treatments for the benefit of the patient.
Multidisciplinary teams of researchers and clinicians work together on this and are responsible for the
bidirectional transfer of the knowledge: from the patient to fundamental research and vice versa.
85
132
86
The stakeholders regard both action 28 and action 29 as positive (see [9;10]), but they indicate that
communication between researchers and scientific networks needs to be improved (Table 48). The
participants point to the following indicators: the number of translational research studies, the number
of patients participating in these studies, and the number of publications and theses arising from the
financing.
Average
Median
SD
n (%)
BC and CP
Patients
BC and CP
Patients
BC and CP
Patients
BC and CP
Patients
Action 28
5.3
1.0
5.5
1.0
1.8
0
16 (62%)
1
Action 29
5.7
6.0
6.0
6.0
1.3
0
14 (54%)
2
Table 48: Scoring on the question ‘success’ of action 28-29 (maximum score = 7).
Discussion
The extent of translational research in Belgium is difficult to determine. We may anticipate
breakthroughs in many application fields of translational research, but these are by their nature difficult
to predict. In practice it is much more important to create optimum conditions for ground-breaking
translational research than to attempt to encourage breakthroughs in a number of limited and tightly
defined fields.
Circumstances that may facilitate translational research are the number of researchers, the
infrastructure, financing, commercial activity, legislation and regulation. Close interaction between
medical faculties and academic hospitals, as established in university medical centres, is likewise a
significant factor. The combination of patient care and research in the same organisation stimulates
collaboration between clinical and non-clinical researchers. The availability and level of education of
clinical researchers is also an important factor.
The scientific analysis of the financed projects in translational oncology research will be performed by
experts (planned for 2013).
Findings
1. Twenty-nine (29) projects were financed by the FPS Public Health between 2009-2011.
2. Seven (7) hospitals are receiving structural financing.
3. Experts will perform a scientific analysis of the projects selected.
86
133
ACTION 30: APPLICATION OF HADRON THERAPY IN BELGIUM
This action consists of two measures:
1. A feasibility study into building and operating a hadron therapy centre in Belgium (in
preparation).
2. Stepping up the reimbursement of treatments and travel expenses for cancer patients who
need hadron therapy (in preparation).
Objectives
87
This action is intended to ensure the accessibility of innovative forms of treatment.
The Belgian Study Centre for Nuclear Energy (SCK•CEN), the Belgian Foundation against Cancer and
various Belgian universities that perform applied clinical research have recently established the
Belgian Hadron Therapy Consortium (BHTC). This consortium is involved in preparing for a feasibility
study into a Belgian hadron therapy project (measure 1), which will take 2 years. This feasibility study
will investigate the feasibility and added value of establishing such a centre in Belgium, in terms of the
target group, the organisation and the financing. The contract for performing the feasibility study by the
Belgian Hadron Therapy Centre Foundation Project was signed in July 2011 and runs until
31 December 2012. The results of the first phase of the feasibility analysis are expected in 2012.
Reimbursement of the care and transport costs of cancer patients who have to use this new form of
radiotherapy will be provided in collaboration with existing European centres for hadron therapy
(measure 2). In expectation of this measure coming into force, people can call on the special Solidarity
Funds.
Particle therapy or hadron therapy is an emerging technique within radiotherapy. Protons and carbon
ions have been used for the treatment of many different solid cancers, and worldwide several new
centres with large accelerators are under construction. Due to the physical and radiobiological
properties of hadrons, hadron therapy enables more precise treatment of the tumour, leading to a
reduction of damage to normal tissue and/or improvement of local disease control in cancer treatment
[67]. More precise tumour treatment allows dose escalation for tumours that may benefit from it, such
as intra-ocular melanoma or chondroma of the spine, while reduction of damage to normal tissue may
be of particular interest for the prevention of late complications, for example in children treated with
irradiation. However, there is an ongoing debate regarding the cost effectiveness of this technique, in
particular whether the high costs of accelerators and beam delivery for particle therapy are justified by
a clear clinical benefit. In 2007 a feasibility study by the KCE did not support building a Belgian hadron
87
These objectives were derived from the introductory text of each action described in National Cancer Plan 2008-2010 (see
134
therapy centre because there was not sufficient scientific evidence of clinical efficacy
[68]. A more
recent review analysing current clinical results in the field worldwide also stated that in many cases the
clinical data is still not sufficient to draw firm conclusions about the clinical effectiveness of particlebased therapy, mainly due to the lack of phase III trials [67].
88
The degree of success as indicated by the participants in the qualitative evaluation is rather moderate
for measure 1 (2/7 – Table 49). However, the participants do not elaborate on this. The scores are
higher for measure 2.
Average
Median
SD
n (%)
BC and CP
Patients
BC and CP
Patients
BC and CP
Patients
BC and CP
Patients
Measure 1
2.4
4.0
2.0
4.0
1.6
2.8
18 (69%)
2
Measure 2
4.3
4.5
4.5
4.5
2.3
3.5
12 (46%)
2
Discussion
The federal government has been financing the feasibility study since 1 July 2011. A number of substudies are examining the feasibility of a hadron therapy centre in Belgium, the possible therapies, and
the technical construction of the centre.
Meanwhile the Wallonia Region is preparing the financing of a hadron therapy centre.
Findings
1. The results of the first phase of the feasibility analysis are expected in 2012.
2. Reimbursement of treatments and travel expenses abroad is in preparation. The NIHDI approved a
proposal for a Royal Decree in May 2012 and reserved a budget of 3.5 million euros for this.
88
135
ACTION 31: REINFORCE THE BELGIAN CANCER REGISTRY
1. The establishment by RD of the Cancer Registry Foundation of Public Utility (in operation
since 12 February 2010).
2. The establishment of an Advisory Committee for users of the data of the Foundation of Public
Utility of the Cancer Registry (in preparation).
3. The financing of the Belgian Cancer Registry (in operation since 2009).
Objectives
89
1. Generate high-quality data about cancer.
2. Guarantee access to cancer data.
The Belgian Cancer Registry Foundation of Public Utility was established by the RD of 23 December
2008, published in the Belgian Official Gazette of 10 February 2009 (measure 1). The Belgian Cancer
Registry is responsible for the continuity of cancer data recording in Belgium. The Advisory Committee
(measure 2) is among other things responsible for the supervision and evaluation of the qualitative
and quantitative aspects of tumour data recording and for formulating suggestions for optimising the
recording and analysis of the data. The RD of 10 December 2009 describes the composition and
functioning of the Advisory Committee of the Belgian Cancer Registry. At present the FPS Public
Health is assembling the applications of all the organisations involved in the RD. The appointment of
the members incurred a delay because the caretaker government (26 April 2010 to 6 December 2011)
could not make appointments. The financing of the Belgian Cancer Registry is divided between
several stakeholders, including the Federal Government, the Communities and Regions, the NIHDI,
the Foundation against Cancer, etc. Discussions are presently being conducted to simplify the
financing of the Belgian Cancer Registry (measure 3).
The Belgian Cancer Registry is tasked with
•
collecting data;
•
subjecting it to quality control;
•
processing and analysing it;
•
coding and storing it;
•
reporting on the data;
•
making it accessible ;
•
protecting it.
89
136
The Belgian Cancer Registry must also collect anatomopathological test results in the context of the
early detection of particular cancers and use them to create a central cyto-histopathology registry
(http://www.Cancer Register.org/default.aspx?PageId=36).
90
The results from the qualitative evaluation indicate that the participants in the qualitative evaluation
considered the Belgian Cancer Registry positively (see [9;10]). The three measures that fall under this
action get high scores (Table 50). An evaluation by international standards and by international
accreditation is expected. However, the participants would like the backlog in the annual reports and
the quality of the reports to be monitored. In future, the centralisation of the data for follow-up and
aftercare in cancer care should be handled. The participants in the qualitative evaluation expect a high
degree of transparency and efficiency concerning the financing of the Belgian Cancer Registry.
Average
Median
SD
n (%)
BC and CP
Patients
BC and CP
Patients
BC and CP
Patients
BC and CP
Patients
Measure 1
6.1
4.5
6.5
4.5
1.2
1.3
24 (92%)
10
Measure 2
6.1
5.7
6.5
6.0
1.4
1.5
17 (65%)
3
Measure 3
5.3
5.0
6.0
5.0
2.1
1.0
19 (73%)
3
Discussion
The Belgian Cancer Registry is an essential element in the provision of high-quality cancer care. It
centralises data about cancer care as well as screening programmes. This data is essential for
monitoring quality, the huge number of scientific studies in cancer care, and the impact of the Cancer
Plan. The elapsed time between the recording and publication of cancer-related data is currently two
years, which is an acceptable length of time compared to international cancer registries.
Conclusion
1. The Belgian Cancer Registry has been re-shaped into a Foundation of Public Utility.
2. The appointment of the members of the Advisory Committee is under way.
Discussions are presently being conducted to simplify the financing of the Belgian Cancer Registry.
90
137
ACTION 32: ESTABLISHMENT OF THE CANCER CENTRE
The Cancer Plan foresaw the establishment of a cancer reference centre, which was later called the
Cancer Centre (launched in September 2008). The Cancer Centre is financed by the NIHDI.
Objectives
91
This action is intended to result in the best possible coordination of and collaboration between the
various players involved in the fight against cancer in Belgium.
The Cancer Centre was established on 1 September 2008 by an agreement between the Scientific
Institute of Public Health (SIPH) and the NIHDI. This agreement was extended in 2011 to
31 December 2012. The Cancer Centre ensures continuing support for the fight against cancer in
Belgium. The Centre is responsible for the permanent evaluation of the Cancer Plan and provides
advice and recommendations to policymakers based on this evaluation. Finally the Cancer Centre
organises consultations on a large scale with representatives of the field to centralise all pertinent and
necessary expertise relevant to developing recommendations.
In 2011 the Cancer Centre conducted a first analysis of the results of the actions defined in the Cancer
Plan 2008-2010. In addition a website has been set up to provide information for all parties involved in
the field of cancer.
92
The participants’ evaluation was good (Table 51). There is confusion about the Cancer Plan and the
mission of the Cancer Centre. Members of the Coordination Platform are unclear about the role of the
Cancer Centre. This was revealed by a number of remarks about the Cancer Plan as a whole under
the action ‘Establishment of the Cancer Centre’. The members of the Advisory Committee who are
more closely involved in the daily operation of the Cancer Centre and defining the remit of the Cancer
Centre, give a good evaluation (see [9;10]). The patients do too. The latter group values the following
points in particular:
Smooth collaboration with the Cancer Centre;
Support that is obtained in order to grasp particular subjects.
The patients describe the Cancer Centre as the institution that “fills in the blank space of the puzzle” of
the fight against cancer in Belgium.
91
92
138
Average
Measure 1
Median
SD
n (%)
BC and CP
Patients
BC and CP
Patients
BC and CP
Patients
BC and CP
Patients
4.2
4.8
4.5
5.0
1.7
1.7
21 (81%)
12
Discussion
In the three years that the Cancer Centre has been operational in the fight against cancer, the Centre
has developed into a permanent discussion partner. The continuity of the Cancer Centre is ensured in
the coalition agreement of 1 December 2011. This also affirms that the work of the Cancer Centre will
be included in the ‘Institute for providing a coordinated response to the great challenges regarding
93
provision of health care’ .
Findings
1. The Cancer Centre has been established.
2. A website has been set up to provide information for all parties involved in the field of cancer.
3. The permanent evaluation of the actions and measures defined in the Cancer Plan 2008-2010
has started. A first basic report has been written.
4. The Cancer Centre is included as one of the players in the field (in the fight against cancer).
93
Coalition Agreement 1 December 2012
139
CONCLUSION
INTRODUCTION
This document comprises an extensive evaluation of the impact of the implementation of the Cancer
Plan 2008-2010. The first part contains the results of the evaluation of the impact of implementing the
Cancer Plan 2008-2010. In the discussion the following questions are answered:
1. Have the objectives associated with the Cancer Plan been reached?
2. Have the individual objectives of the actions been reached?
3. What is the situation in which particular actions have been identified?
4. What is the impact of implementing an action taken in the Cancer Plan?
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The evaluation consisted of several phases, including
•
generating an overview of the existing literature;
•
identifying the indicators for each action;
•
analysing the feasibility of the indicators;
•
examining the experiences and perceptions of the parties involved in the field and the patients
(via the patient organisations);
•
quantifying and reporting the indicators identified in order to reflect the evolution of the state of
affairs and the impact (where possible).
GENERAL DISCUSSION
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Based on the results of the evaluation, the Cancer Plan appears to be well perceived . However, this
is a first evaluation and further monitoring is essential. The Cancer Centre will regularly announce the
monitoring of a set of indicators on its website. In addition, each year a number of topics will be
investigated in more detail, since some measures are not suitable for annual evaluation.
Did Belgium need a cancer plan?
During the Belgian Presidency in 2010, Minister Onkelinx emphasized the importance of “Improving a
good health condition within an aging European population”. One of the main discussions was the
value of a cancer plan in gearing policy to the trends in public health.
The WHO describes a cancer plan as a public health programme created in order to reduce the
incidence of cancer and its associated mortality and to improve the quality of life of cancer patients.
These objectives should be attained by the systematic and fair implementation of scientifically based
strategies for prevention, early detection, diagnosis, treatment and palliation, so that the available
resources are used as efficiently as possible [69]. A cancer plan can further contribute to improved
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Since the implementation of the different initiatives took place at various points in time, in certain cases, we were only able to
provide a null measurement for the results in. Nevertheless, these null measurements will ensure further monitoring.
Discussed during meetings held for this purpose of the Advisory Committee and the Coordination Platform on 30-05-2012 and
03-07-2012.
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coordination and collaboration. Finally a cancer plan can improve the dissemination of best practices
among the institutions involved (EU DG-SANCO, EPAAC).
Cancer is the second largest cause of death in Belgium, after cardiovascular diseases. Moreover, the
incidence of cancer will continue to rise as the population ages. The term ‘cancer’ covers a range of
very different diseases. There is variability regarding chances of survival, mortality, incidence and
quality of life. We strive for the best possible survival for each patient, regardless of the type of cancer.
The figures with regard to cancer thus underscore the importance of a cancer plan.
In addition to the statistics concerning cancer, there are still a number of specific challenges that have
to be tackled in a systematic and sound manner. A cancer plan is perfectly well suited to this. All these
challenges are underlined by the results of the evaluation of the Cancer Plan.
Firstly, the incidence of lung cancer in women continues to rise. At the same time we notice that
lifestyle factors that are directly related to lung cancer (smoking behaviour) have scarcely changed,
despite years of preventive campaigns (action 1).
Secondly, we see in the discussion of action 9 the existing official national guidelines for cancer
treatment in Belgium. Since the launch of the Cancer Plan there has been an enormous catch-up in
progress. These guidelines are the basis for the identification of clinical pathways and/ or care
trajectories. Despite this catch-up, Belgium only has official guidelines for a fifth of all types of tumours.
The available guidelines cover just over half of Belgian cancer patients.
Thirdly, before the launch of the Cancer Plan studies published by the KCE indicated that there was
great variation in the way in which care is offered and the quality of this care. It is also often stated in
this context that there is a need to identify reference centres in Belgium. Centralisation of care is also
used in other countries to provide the best possible care for everyone. In 2003 the RD on oncological
care programmes was published. Multidisciplinary consultations (MOCs) were instituted and have
been re-evaluated within the Cancer Plan. This re-evaluation
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led to an enormous growth in the use
of the MOC system (action 7 and action 8), as a result of which an analysis of the efficient use of
MOCs was requested. MOCs form the basis for our cancer registration. Registration of cancers will
give us more insight into the resources needed to ensure the best possible care for each cancer
patient by means of prevalence data, analysis of the quality of care, etc.).
Finally, we mention the issue of rare cancers (action 13 and action 12 concerning childhood cancer).
These cancers require a demand an approach that requires centralisation and additionally transcends
national borders.
The situation before the launch of the Cancer Plan and the results of the evaluation of the Cancer Plan
indicate that a structured approach – a cancer plan – was and is necessary to cope with these
challenges.
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And the association of the MOC to the financing of nurses, social assistants, psychologists, data managers and dieticians.
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What should a cancer plan include?
The purpose of a national cancer control programme (NCCP) or cancer plan is to limit the number of
new tumours, reduce deaths due to cancer, and improve the quality of life of people with a diagnosis
of cancer. A cancer plan therefore includes a number of aspects: prevention, early detection,
diagnosis, treatment and palliative care.
SITUATION IN THE NATIONAL CONTEXT
Initially a cancer plan will assess all dimensions of the problem: the risk factors for developing cancer,
how many new diagnoses of cancer are made each year, how many people die of a tumour, the
impact of cancer on quality of life, the financial implications (individual and for society), and the
resources and structures available for tackling the problems that cause cancer. Obviously good cancer
registration is indispensable for a correct assessment of the situation.
PREVENTION
Taking preventive measures is the most effective way to boost health in the population in the long
term. Reducing or preventing exposure to carcinogenic substances will decrease everyone’s individual
risk of developing a tumour. In addition to tobacco, which is responsible for 30% of all deaths due to
cancer, attention must be given to other lifestyle factors as well: alcohol, nutrition, physical inactivity
and obesity, and exposure to chemicals, UV and ionising radiation. Infection by particular viruses or
bacteria can also contribute to the development of cancer. Vaccination may be a possible solution
here. It is therefore of the greatest importance to inform the population correctly about these risks and
encourage them to make healthy choices.
SCREENING AND EARLY DETECTION
The approach consist of screening the asymptomatic population at risk and determining, as early as
possible, a correct diagnosis for symptomatic persons and those with a deviating screening result in
order to start the most appropriate treatment. Prompt diagnosis increases the chance of successful
curative treatment. It is of utmost importance to increase awareness of the signs and symptoms of
cancer, especially in those cases where screenings is not indicated. This can be achieved by
informing the public and via primary health care workers with sufficient training.
CURATIVE CARE
To provide the best possible care for everyone, a cancer plan should define guidelines for the
diagnosis and treatment of the (most common) tumours. These guidelines must ensure the wellconsidered use of available resources and greater accessibility. After all, each patient is entitled to
treatment according to the applicable guidelines. Since treatment is often complex and may require
advanced technologies or additional investments, it is often appropriate to start innovations at a limited
number of locations.
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In addition to the medical treatment, each patient should receive appropriate counselling and support
once the diagnosis has been made. Counselling and support should also be provided during follow-up,
remission and/or survivorship.
PALLIATIVE CARE
Palliative care and pain relief are an integral part of a cancer plan. They contribute strongly to an
improved quality of life for cancer patients. Guidelines can promote the best possible care for
everyone, even in a palliative setting. Sound training enables health care workers to given attention to
the patient’s psycho-social and spiritual needs as well as pain relief.
OTHER
Depending on the available budget, other topics may also be included in a cancer plan. In this
connection we could consider the provision of (additional) training courses, investments in scientific
research and innovative treatments, and the establishment of a monitoring system.
MANAGEMENT
Along with the content, competent management of a NCCP is crucial in order to ensure that the plan
actually meets the proposed objectives. Good management ensures proper planning, continuous
improvement of performance, adjusting the measures whenever necessary, and maintaining the
momentum.
The current Cancer Plan includes the vast majority of the above-mentioned aspects. Furthermore, the
Cancer Plan is reinforced by a number of policy initiatives in other areas. For example, the topic of
exposure to carcinogenic substances is also included in the National Environment Health Action Plan
(NEHAP). At the level of authority of the Communities as well, the national Food and Health Plan and
the Fund to Fight Addiction are launching a wide variety of initiatives that strengthen the fight against
cancer. Finally, the Cancer Plan is complementary with other initiatives in order to achieve a coherent
policy on palliative care and terminal care.
The Cancer Plan cooperates closely with the above-mentioned initiatives to develop the best possible
policy regarding the fight against cancer.
Is the Cancer Plan a step in the right direction?
More than half of the measures are in operation. Another 50% of the measures in preparation are in a
final phase. We expect them to be rolled out in the near future. Since the launch of the Cancer Plan,
another 13 measures have been added. Finally, it should be emphasized that the results of the
qualitative survey show that the Cancer Plan has been well received. The results of the evaluation of
various actions likewise indicate a positive trend; for example, we are catching up in the development
of official national guidelines (action 9).
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Before the launch of the Cancer Plan, round-table discussions were organised and contributed to
identifying priorities. One of them was the establishment of a reference centre – the Cancer Centre –
that is responsible for arranging, facilitating and ensuring collaboration between the various
stakeholders in the field. The Cancer Centre is presently establishing cooperation between all
stakeholders with regard to the evaluation of the Cancer Plan and the identification of proposals for
future measures. A qualitative survey has been conducted to determine the vision of all stakeholders.
Ample time has also been provided for reconciling and discussing the results of the evaluation. The
Cancer Centre has identified and implemented a method for using all available expertise and
knowledge to identify future measures (see also the methodology for the identification of proposals for
future measures).
The results of the evaluation of the Cancer Plan presented in this report are underpinned by the
quantitative results on the one hand (see Results 2011 [8]) and the qualitative analysis on the other
hand (see qualitative evaluation [9;10]). These results demonstrate the progress since the start of the
Cancer Plan in March 2008.
The WHO defines the objectives of a cancer plan as the reduction of cancer incidence and its
associated mortality. However, a causal link between the actions and measures taken in the Cancer
Plan and the incidence or mortality of cancer can never be proven. It seems more appropriate to aim
for the best possible prevention and care for each cancer patient. “Care” comprises preventive care
(timely detection), medical treatment, counselling and support, palliative care and end-of-life care.
Clear targets should be set for each of these phases, and for each type of tumour and age group. A
prerequisite for this is a clear view of the current situation.
Quantifying cancer in terms of incidence, mortality, survival and prevalence is thus necessary if we are
to estimate the magnitude of cancer.
The Cancer Plan: a work in progress
The Cancer Plan still has some challenges to deal with. At the time of this evaluation (2011), we can
generally state that the intended target populations are not fully reached: out of sight is out of mind. To
boost the impact of the Cancer Plan to its full potential, efforts should be made to improve the visibility
of the measures of the Cancer Plan. Belgium is among the countries with the highest incidence of
cancer and therefore needs a Cancer Plan – a structured approach to optimize the fight against
cancer.
It appears that several initiatives for prevention and screening (such as screening programmes for
breast, cervical and colorectal cancer) could be implemented more effectively. Good registration is
imperative for monitoring and for standardised reporting and evaluation of the population programmes.
A screening programme for colorectal and cervical cancer is not yet available throughout the country.
Such programmes can contribute to the reduction of mortality due to cancer and to improved quality
of life and a reduction of costs, such as chemotherapy in stage II and III colorectal cancer.
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When organising screening programmes, sufficient attention should be given to improve the degree of
participation, especially in specific target groups. In this regard, it might be very useful to identify and
share best practices between the different communities and on the international level. Harmonisation
of the screening programmes and the nomenclature of the obligatory health insurance should be
achieved as soon as possible in order to optimise the effect of screening for breast, cervical and
colorectal cancer.
In addition to mass screening, sufficient attention should be given to preventive measures as
described earlier. Reducing smoking and supporting smoking cessation are especially worthy of
notice. Besides the measures in the Cancer Plan and the efforts of the Communities, we should keep
in mind that several projects are financed each year by the Tobacco Fund (part of the fund for
combating addiction). These resources must also be used to best advantage, so the impact of the
projects financed by the Tobacco Fund should also be considered in the evaluation.
The rate of cancer survival is rising every year. However, the centralisation of adequate diagnosis and
treatment for less frequent cancers, including childhood cancers, is not yet implemented. Official
guidelines for diagnosis and treatment are in preparation but still require implementation. Since the
launch of the Cancer Plan we have been catching up. Nevertheless, several guidelines still need to be
drawn up.
Even for patients with very common tumours, multidisciplinary care pathways have not yet been
defined or implemented, which is obstructing rehabilitation, psychosocial care and other supporting
care. Likewise these aspects are not being properly coordinated.
Centralisation of care for patients with less common and/or complex cancers, including those in
children, may be the next step to improve survival. Attention should be given to providing cancer care
by means of care pathways for all tumours to reduce the delay between diagnosis and treatment.
These pathways should include rehabilitation, systematic screening of the care needs of the patient
and his family, and return to society. Furthermore, efforts should be made to improve the work
environment of people in the supporting disciplines, such as nurses, social assistants and
psychologists. The period after the treatment also deserves more attention; there is a need for
guidelines, support and counselling during this period.
Personalised medicine – linking tumour markers to specific treatments – is on the increase. In order to
support this evolution, a modified legal framework for the development of medicines in parallel with
diagnostic tests appears to be necessary. Optimal access to innovative medicines and/or treatments,
including unmet medical needs, access to clinical trials, cell therapy and so on, is an important
element of treatment.
Forty-four per cent of cancer patients are over the age of 69, so onco-geriatrics is an important
component of cancer care. Onco-geriatrics faces specific challenges, of which multi-morbidity and comorbidity are some examples. Comorbidity has an impact on the course of cancer [70]. Comorbidity
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rises linearly with age and affects the amount of care that is given [71]. The most frequent occurring
conditions are heart disease, hypertension, chronic obstructive pulmonary disease (COPD) and
diabetes mellitus [70]. These comorbidities affect the length of hospital admissions and treatment
costs [71].
Reintegration and survivorship
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should be part of cancer care. These are currently neglected. The
results of the evaluation of the Cancer Plan show, for example, that children with cancer have an 85%
chance of survival. However, these children often report late adverse effects that obstruct effective
reintegration. This is also a concern for (young) adults. In onco-geriatrics attention should also be
given to the risk factors that can hamper reintegration, such as a problem with falling as a result of the
treatment and/or the cancer.
Diverse initiatives have been supplemented by additional training courses. In this way, it is possible to
ensure knowledge and expertise. However, further thought should be given to the long term. Training
courses should be structurally embedded to ensure the highest quality, and with it the impact in the
field. Along with training courses, financing of pilot projects in hospitals contributes to stimulating
innovation. In future, we should investigate the impact of this research funding within hospital
financing.
A great deal of research is in the pipeline, and several clinical studies are up and running. They are
being financed by various sources. In future, efforts should be made to use the available resources in
an efficient manner. Initially, optimal sharing of information between various sources of funding should
be organised.
Each future initiative and each measure should be formulated according to the SMART model to
enable its evaluation and any possible adjustment.
The letters of SMART stand for:
•
Specific: The objective must be unequivocal.
•
Measurable: Under what (measurable/observable) conditions or form is the objective attained.
•
Acceptable: Is this sufficiently acceptable to the target group and/or management?
•
Realistic: The objective must be achievable.
•
Time-limited: When (in time) must the objective be attained?
If each measure is formulated using the SMART model, the available resources (personnel, budget,
etc.) can be used efficiently. The responsible organisation should always be determined for each
action. The Cancer Registry Foundation needs continual support so they can deliver the data on
“cancer burden” annually. In this respect, the Cancer Registry Foundation must be able to guarantee
up-to-date data of optimum quality.
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The term ‘survivorship’ is used in the literature to refer to the period in which a patient is in remission or is declared cured, as
well as the period in which the patient can live with cancer in a stable situation. This period is often divided into early
survivorship (1-2 years after the treatment), medium-term survivorship (2-5 years after the treatment) and late survivorship (>5
years after the treatment). It effectively covers living with and surviving cancer.
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The registration of data should be scrutinised. Belgium has numerous statistics and incurs a lot of
administrative effort. Issues such as coupling, quality and timeliness of data, etc. should be examined
and must be tackled in order to achieve effective monitoring and permanent evaluation of the Cancer
Plan. Registration has to be set up in an efficient and purposeful manner and in such a way that the
recorded data can be used for evaluation.
The Cancer Plan is pursuing 4 objectives:
1. Reducing mortality;
2. Reducing the incidence of cancer;
3. Reducing morbidity;
4. Improving the quality of life of patients and relatives.
To date there is no population data (data from all the oncological care programmes) available on the
quality of life of patient s and their relatives. In future this fourth objective should also be furnished with
data.
An ongoing study of the OECD shows that coordination and collaboration are essential elements for
optimising the fight against cancer. When investments hit a ceiling, reliable coordination and
collaboration will continue to yield improved results by making efficient use of resources (Performance
of Cancer Care, Health Committee, OECD).
The objectives have not been attained for all initiatives and/or measures, in part due to the short
implementation time or a lack of clarity about what was intended when implementing the measure. The
indicators were identified afterwards. The necessary data for these indicators is thus not always
included from the start of a measure, which hinders the evaluation of the impact of the implementation.
In the next phase the goals to be attained need to be quantified and broken down into short, mediumterm and long-term objectives. Identification of these targets will facilitate monitoring the impact of the
Cancer Plan.
Do we still need a cancer plan?
After cardiovascular diseases, cancer is the largest cause of death in Belgium. The ageing population
will give rise to a growing number of cancer patients. At the same time medical science is progressing
in such a way that more cancer patients survive or can live a long time with cancer. This means that
prevention, diagnosis, treatment, aftercare, re-integration and palliative care will gain in importance.
Similar trends can be seen with several other conditions: more and more people suffer from
cardiovascular diseases, the number of lung conditions (including COPD) is increasing, etc. In short,
various non-communicable diseases are becoming more prominent. Medical science is also making
progress here, and a great many people will survive or be able to live a long time with their disorder.
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The current health care system will become unsustainable in the future. Our prevalent organisation of
care will have to adapt to cancer, and to other non-communicable conditions. Many measures within
the Cancer Plan already take this shift into account, such as initiatives emphasizing collaboration
(actions 8, 9, 12, 23, etc.). Many measures in the Cancer Plan benefit not only cancer patients, such
as the reimbursement of voice prostheses, efforts to reduce costs, continued care for children and
measures for palliative care, to mention a few. There are a number of specific investments, such as
the financing of nurses, social assistants, psychologists, data managers and dieticians. Every measure
for encouraging lifestyle choices, determining genetic risks and timely diagnosis (whether or not
disease-specific) is beneficial for all non-communicable diseases.
The results of the evaluation of the Cancer Plan and the bare statistics regarding the cancer burden in
Belgium substantiate the continuing need for a Cancer Plan.
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GLOSSARY
Accelerator
Irradiation system
Screening programme Offering the whole population or subgroups of the population a medical
examination. This may be repeated over time and can be restricted to a
particular condition, e.g. cervical cancer
Special Solidarity
The SSF is an additional safety net besides the ‘usual’ insurance coverage for
Fund (SSF)
medical care (obligatory health insurance). It is operational since 1990 within
the NIHDI.
Cachexia
Severe condition of general weakness and malnutrition
Carcinoma in situ
Pre-invasive cancer: it involves cells with malignant characteristics that have
not yet invaded the surrounding tissue and have not yet spread at a distance
Chondroma
A benign cartilage tumour
Colonoscopy
Visual examination of the large intestine
Extended consultation The nomenclature provides for a higher fee for physicians, enabling them to
discuss the diagnosis and the treatment plan for the cancer in more detail with
their patient
Cumulative Risk (CRi) The probability that individuals contract a particular disease during a specified
period. For cancer, it is expressed as the percentage of newborn children who
would be expected to develop a particular cancer before the age of 75 years.
Crude Incidence Rate The crude rate for a specific tumour and population is the number of new cases
(CR)
observed during a given time period divided by the corresponding number of
people in the population at risk. The crude rate is expressed as the number of
new cases per 100, 000 persons per year.
cTNM
Clinical TNM is the extent of the cancer, based on all possible information
obtained before removal of the tumour
Data manager
Person within the Oncological Care Programme responsible for fully recording
and passing on the data necessary for cancer registration
Date of incidence
Date when the microscopic diagnosis is made
DNA
Chemical substance present in each cell of an organism and in which all
hereditary properties are fixed
Efficacy
The use of the financial, personal and material resources in such a way that a
maximum output is obtained for a given quantity of resources
Effectiveness
The achievement of the desired result, for example of a particular type of
assistance
E-learning module
A course taught via the Internet
Hereditary trait
A characteristic that has been transferred from the previous generations by
means of a gene (or a set of genes)
Estimated Annual
Indicates the change in incidence per year
Percent Change
(EAPC)
Genetic counselling Giving genetic advice on the risk and prognosis or counselling people found to
be at increased genetic risk of cancer
Genetic predisposition The presence of a particular gene in a person due to which their risk of
developing cancer in a particular stage of life is higher than in people without
that gene. A very common example is the increased risk of breast cancer in
women who test BRCA positive
Feasibility study
An analysis of the functional, technical and financial aspects of a project
Hospitalisation
Insurance that covers medical and paramedical costs during an admission to
insurance
hospital
iFob test
A test to detect blood in the stools (immunochemical faecal occult blood test)
Incidence
The number of new cases of a particular disease in a specified population in a
given time period.
Indicator
A parameter that can be used to monitor a process. An indicator has a
signalling function and indicates the level of quality. When an indicator deviates
from the specified standard, adjustment is necessary – for example, an
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indicator in detecting breast cancer is the number of people who participate in
the detection of breast cancer
Intraocular melanoma Malignant tumour of the skin tissue in the eye
Carbon ions
Particles that are used for radiation
Late adverse effects Effects that occur at a later point in time than the cancer treatment itself
Life expectancy
The anticipated average duration of life
Liaison team
Team responsible for the smooth transfer of a patient from one department or
institution to another
Informal caregiver
Someone who takes care of the elderly, ill people, etc. but who does not do this
as a job. Often family or friends of the patient. .
Median
The middle value in a series of numbers that are arranged in size
Multidisciplinary
A discussion between doctors from different disciplines. They are collectively
Oncological
responsible for the treatment
Consultation (MOC)
National Cancer
A policy plan by which the government of a country attempts to reduce the
Control Programme number of cases of cancer and the deaths from cancer
(NCCP)
Non-conformity
Deviation
Oncogeriatrics
The medical treatment of cancer specifically adapted to the needs and
capabilities of elderly patients (the term is often used for cancer patients older
than 70)
Oncological imaging Visualising the tumour in the body by means of MRI, CT, mammography, etc.
Paramedic
A person with a job or profession that is (in)directly related to medicine, but who
is not a doctor – such as a physiotherapist, logopedist, etc.
Coverage
The proportion of the target group of screening that is actually participating in
the programme (%)
Particle therapy
A type of radiotherapy that uses protons and other ionising particles to kill
cancer cells
Pragmatic
Useful and usable in practice
Prevalence
Total number of cases of illness in a population group or area at a particular
point in time
Protons
Subatomic particles with a positive electrical charge
pTNM
Pathologic TNM: the characteristics of the tumour after it has been removed
Radiotherapy
Treatment of cancer by means of irradiation
Reference centre
A centre that collects all information and knowledge and is therefore able to
give advice
Reintegration
Resumption of life in all its facets; often divided into the return to ‘normal’ life
and the return to work
Relative survival
The internationally accepted method for calculating disease-specific survival,
calculated as the ratio of absolute survival to expected survival
Patient contribution
In Belgium the patient’s own contribution to the cost of health insurance,
intended to curb unnecessary visits to the doctor
Residual body
Body tissue of a biopsy that is left after all tests have been performed to make a
material
diagnosis
Stem cell
Used in the treatment of blood cancer, lymph node cancer and specific
diseases of the blood in which stem cells are transplanted (i.e. cells that are still
transplantation
able to develop into any other type of cell)
Survivorship
Ex-cancer patients who are in remission with a good chance of survival longer
than 5 years after the diagnosis
Tobaccologist
An expert who helps people shake off their addiction to smoking
TNM (not the same as TNM is a classification used to describe malignant tumours in which the T
Stages)
stands for tumour, N the lymph nodes and M the metastases or the dispersion
of cancer cells in the body
Procrastination
Behaviour in which the patient postpones his medical care for various reasons.
The causes are very diverse: financial, anxiety, no longer wanting to be treated,
etc.
Problems with falling Incidents of falling are a frequent problem with, among others, elderly people
living at home. A fall gives rise to physical, psychosocial and financial
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False negative
False positive
Obligatory health
insurance
Early diagnosis
World Health
Organisation (WHO)
consequences.
When a test indicates that a person does not have a particular disease, but in
reality the person does have the disease
When a test indicates that a person has a particular disease, but in reality the
person does not have the disease
Obligatory health insurance provides partial or complete reimbursement of most
health care costs. Usually part of the cost must be paid by the patient. This is
called the personal contribution.
Diagnosis of cancer at an early stage of the disease, often before the person
has complaints or symptoms
A specialist organisation of the United Nations, headquartered in Geneva, with
the goal of mapping worldwide aspects of health care, coordinating activities in
the field of health care, and improving the health of people around the world.
Standardisation of the classification of the incidence per age category
World agestandardised
incidence rate (WSR)
Rare cancer
A cancer with a prevalence of 6/100000; to date around 186 types of rare
tumours have been described
Clinical pathway
The set of methods and tools used by the members of the multidisciplinary and
inter-professional team to coordinate tasks and make arrangements for a
specific patient population
Care trajectory
Care trajectories aim to organise the collaboration between patients diagnosed
with a chronic disease and their general practitioner, specialists and other
health care workers in order to monitor the patient in a qualitative way
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LIST OF FIGURES
Figure 1: The ten most frequent tumours by gender, Belgium 2009..................................................... 10
Figure 2: Comparison of cancer incidence in Europe: all invasive cancers, 2008................................ 11
Figure 3: The 10 most common causes of death from cancer by gender, 2008................................... 13
Figure 4: Comparison of cancer mortality rates in Europe: all invasive cancers (2008) ....................... 14
Figure 5: 5-year relative survival in men, Belgium. ............................................................................... 15
Figure 6: 5-year survival in women, Belgium. ....................................................................................... 15
Figure 7: Number of consultations per year with a smoking cessation specialist or a medical doctor. 26
Figure 8: Number of calls received by the FPS Public Health Contact Center about the total smoking
ban, since its introduction on 1 July 2011 up to and including the end of 2011.................................... 29
Figure 9: Geographical overview of the spread of cervical cancer in Europe....................................... 36
Figure 10: Life history of HPV infections. .............................................................................................. 36
Figure 11: (A) Coverage of screening mammography and (B) total coverage, including screening as
well as diagnostic mammography, per region ....................................................................................... 41
Figure 12: Incidence of breast cancer in women (invasive + in situ) per region, 1999-2009................ 43
Figure 13: Incidence of cervical cancer by stage and age group in Belgium in 2009. .......................... 46
Figure 14: Screening coverage and the number of smears per woman over a 3-year time period, per
age group in Belgium, 2006................................................................................................................... 47
Figure 15: Proportion of extended consultations with specialists (green) compared with GPs (GP,
orange) from implementation (November 2010) to the end of 2011. .................................................... 56
Figure 16: Number of booked MOCs from 2003 to 2011 ...................................................................... 61
Figure 17: Percentage of cancer patients discussed in a MOC, per stage, in Belgium in 2007 (blue
bars) and in 2008 (red bars) for patients with (A) colon cancer, (B) rectum cancer, (C) larynx cancer,
(D) lung cancer, (E) breast cancer and (F) testicular cancer ................................................................ 62
Figure 18: Geographical spread of the 106 hospitals with an oncological care programme and/or a
basic oncological care programme in Belgium...................................................................................... 67
Figure 19: Number of nurses, psychologists and social assistants financed per year in hospitals with a
recognised programme for cancer care. ............................................................................................... 70
Figure 20: Number of nurses, psychologists and social assistants financed per 100,000 new cancer
cases in Belgium in 2009....................................................................................................................... 71
Figure 21: Needs and requirements of breast cancer patients (2010).................................................. 73
Figure 22: Number of trained data managers and data managers who have been financed by the
Cancer Plan, from 2009 to 2011 .......................................................................................................... 75
Figure 23: Number of new cancer cases in 2010 in the 7 Belgian centres active in paediatric
haematology and oncology.................................................................................................................... 80
Figure 24: RARECARE estimates of (A) age-related percentages and (B) relative survival per age
group for rare and common cancers in EU27 ....................................................................................... 84
Figure 25: Number of certified oncological nurses from 2009 to 2011 in the Flemish and French
Communities.......................................................................................................................................... 87
152
Figure 26: Proportion of different types of nurses that were active in oncological services in 2011..... 88
Figure 27: Total number of recognised physicians active in radiotherapy from 2005 to 2010 and
number of acknowledged active radiotherapists per 100,000 new cancer cases needing radiotherapy
from 2005 to 2009 in Belgium................................................................................................................ 95
Figure 28: Percentage of Belgian patients transplanted with a Belgian donor or a donor abroad........ 98
Figure 29: Number of foreign patients who received a transplant from a Belgian donor. ..................... 99
Figure 30: Number of reimbursements of the delivery margin of stem implants, from 2009 (Nov-Dec) to
the end of 2011.................................................................................................................................... 101
Figure 31: Number of lump sums for hair prostheses for people who lost their hair temporarily due to
radiation or chemotherapy, from 2006 to 2011 inclusive. ................................................................... 102
Figure 32: Number of lump sums for hair prostheses for people who lost their hair permanently due to
radiotherapy, from February 2009 to end 2011................................................................................... 102
Figure 33: Number of new diagnoses (N) and the age-standardised incidence (WSR) of invasive
cancers within the age group of 70 years and older in the Flemish Region during the period 1999-2009
with predictions up to 2020.................................................................................................................. 116
Figure 34: Distribution of invasive cancers by age (A) in 2009 and (B) in 2020, according to a
prognosis made by the Belgian Cancer Registry. ............................................................................... 117
Figure 35: Incidence of breast and colorectal cancer per stage and age group in Belgium in 2009. (A)
Breast cancer in females, (B) colorectal cancer in females and (C) colorectal cancer in males. ....... 118
Figure 36: Proportion of tumours with an unknown stage (X) in Belgium in 2009. (A) Breast cancer and
(B) colorectal cancer............................................................................................................................ 119
Figure 37: Number of registered lump sums for palliative home care from 2006 to 2011. ................. 122
Figure 38: The determinants of health ................................................................................................ 127
Figure 39: Current partners within the Belgian virtual tumour bank network ...................................... 129
153
LIST OF TABLES
Table 1: Cancer incidence in Belgium(2004-2009) ............................................................................... 10
Table 2: Comparison of cancer incidence in Europe: top 5 men .......................................................... 12
Table 3: Comparison cancer incidence in Europe: top 5 women.......................................................... 13
Table 4: Health care and public health in Belgium ................................................................................ 17
Table 6: Number of participants in the smoking cessation course organised by FARES and the VRGT,
per year for which funding was granted. ............................................................................................... 26
Table 7: Overview of the checks on compliance with the tobacco legislation by the FPS and the
FASFC. .................................................................................................................................................. 27
Table 8: Scoring of the ‘success’ of action 1. ........................................................................................ 28
Table 9: Scoring on the question ‘success’ of action 2 ......................................................................... 32
Table 10: The number of vaccinations per birth cohort as registered by Vaccinnet, starting 1
September 2010, for the first (HPV1), second (HPV2) and third (HPV3) dose..................................... 35
Table 11: Scoring on the question ‘success’ of action 3 ...................................................................... 37
Table 12: Five-year percentage survival for women with invasive breast cancer diagnosed between
2004 and 2008....................................................................................................................................... 42
Table 13: Scoring on the question ‘success’ of action 4 ....................................................................... 44
Table 17: Number of booked MOCs per type in Nov-Dec 2010 and in 2011........................................ 60
Table 18: Number of MOCs executed per type in Nov-Dec 2010 and in 2011..................................... 60
Table 20: National clinical practice guidelines for cancer treatment ..................................................... 66
Table 22: Support disciplines ................................................................................................................ 71
Table 23: Scoring on the question ‘success’ of action 10 ..................................................................... 73
Table 24: Number of tumours registered via the clinical network versus the pathology network, 2009.
MDS: myelodysplastic syndromes; MPD: myeloproliferative conditions (Belgian Cancer Registry). ... 77
Table 25: Number of tumours for breast and prostate cancer registered according to the type of
network. Source: Belgian Cancer Registry............................................................................................ 78
Table 27: Childhood cancer: five-year survival in Belgium, diagnoses made in the period 2004-2008
(Belgian Cancer Registry). .................................................................................................................... 81
Table 28: Scoring on the question ‘success’ of action 12. .................................................................... 82
Table 29: Results of the analyses of the volume-outcome association for 2 rare cancer surgical
procedures ............................................................................................................................................ 85
Table 30: Scoring on the question ‘success’ of action 13. .................................................................... 86
154
Table 31: Scoring on the question ‘success’ of action 14 .................................................................... 88
Table 33. Number of CT, PET, and MRI devices per region in 2010. Source: hospital statistics, 2010,
FPS Public Health. ................................................................................................................................ 94
Table 35: Number of FTEs financed for cell banks with only haematopoietic stem cells only and for cell
banks with both haematopoietic stem cells and umbilical cord blood since 1 January 2009. Source:
FPS Public Health. ................................................................................................................................ 97
Table 37: Scoring on the question ‘success’ of action 18. .................................................................. 104
Table 38: Scoring on the question ‘success’ of action 19 ................................................................... 107
Table 40: Scoring on the question ‘success’ of actions 21-22 ............................................................ 111
Table 41: Belgian hospitals with a paediatric liaison team.................................................................. 113
Table 43: Prognoses of the Belgian population per age group. .......................................................... 115
Table 46: Scoring on the question ‘success’ of action 26. .................................................................. 127
Table 48: Scoring on the question ‘success’ of action 28-29. ............................................................. 133
155
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160
APPENDIX
This part is largely taken from a summary of Health Systems in Transition Belgium [72].
Different authorised levels for health
Belgium is a federal state with a parliamentary democracy. There are three levels of government – the
federal government, the federated entities (three regions and three communities) and local
government (province and local council administrations). (Figure A and B).
Figure A: The division of Belgium into Communities. We distinguish the Flemish Community (grey), the
French Community (green) and the German-speaking Community (blue).
Belgium has three official languages: Dutch, French and German. Approximately 59% of the
population speaks Dutch, approximately 40% French and less than 1% German. 9.1% of the
population are foreigners.
Figure B: Division of Belgium into Regions. We distinguish the Flemish Region (green), the Walloon
Region (blue) and the Brussels Capital Region (orange).
161
Health falls under the responsibility of both the federal authorities and the federated entities
(communities and regions). The federal authorities are responsible for the regulation and financing of
the obligatory health insurance (NIHDI), the determination of recognition criteria, the financing of
hospital budgets and heavy medical equipment, the legislation concerning various professional
qualifications, the licensing of medicines and control of the prices of medicines.
The federated entities are responsible for health promotion and prevention, namely maternity care and
health care for children and social services, various aspects of community care, coordination and
collaboration within primary health care and palliative care, the introduction of accreditation standards
and the determination of additional accreditation criteria, and the financing of hospital investments.
To foster collaboration between the federal authorities and the federated entities, the Interministerial
Public Health Conference meets regularly (Table A). Many intercabinet work groups, including the
intercabinet work group “Cancer”, work under the auspices of this Interministerial Public Health
Conference. Themes that affect all political levels can be discussed in this “Cancer” intercabinet work
group. In this way collaboration is encouraged.
In the coalition agreement of 1 December 2011 a number of shifts were described in this assignment
of competencies. These changes have not yet been included in Table A.
Federal government
Federated entities
Minister of Public Health and Social Affairs
Ministers of the Communities and the Regions
The disease and disability insurance
Health promotion and prevention: a healthy diet
together with activities and services with regard to
prevention, with the exception of the national
measures regarding prophylaxis.
The families policy. including all standards for help
and assistance for families and children
Recognition standards insofar as they do not
concern the competence of the federal government
Recognition and financing of the day centres for
palliative care
Financing of the organic operation of hospitals
Basic regulations regarding financing of
infrastructure and heavy medical equipment
Standards for the accreditation and recognition
of health professions.
Registration and licences for marketing
pharmaceutical specialties
Interministerial conference
98
Table A: Division of the competencies regarding health care and public health in Belgium.
98
98
Based on extract BWHI 15/08/1980
162
Decision-making within the Belgian health care system is mainly based on negotiations between
different stakeholders. In this respect, the general policy of the health care insurance and the available
budget is determined not only by representatives of the governments and the health insurance funds,
but also by the representatives of employers, employees and the self-employed.
Principles and prices of the Belgian health care system
The organisation of our health services is founded on therapeutic freedom for doctors, freedom of
choice for patients, and reimbursements based on payment per medical act. Our social security
principles are characterised by horizontal solidarity (between healthy and sick people) and vertical
solidarity (largely based on income) and does not select by risk. The financing is largely derived from
proportional social security contributions in line with taxable income and, to a lesser extent,
progressive direct taxation. In addition, there are more alternative financing modes related to the
consumption of goods and services.
Patients contribute to the financing of health care via official patient contributions and a variety of
supplements. The most important payment mechanism is payment per medical act. There are two
payment systems. Direct payment (1), in which the patient pays the complete cost of the service and is
then partially reimbursed by the health insurance;. and the “third payer” system (2), in which the health
insurance company pays the service provider directly and the patient only pays the patient
contribution, the supplements or non-reimbursed services. This system of third payer is applicable for
hospitalisations and under certain conditions can also be used for ambulant care, in order to improve
financial accessibility for vulnerable population groups. The reimbursement of services depends on the
type of service, the income and the social status of the patient (preferential reimbursement or not), and
on the amount of patient contributions that are already paid during that year.
The Belgian health care system is easily accessible. Additional improvements with regard to the
efficacy of preventive and customised care, and of sustainability, can further improve the performance
of the system as a whole. At present a project is under way to evaluate the performance of the Belgian
health care system (study KCE 2011-40 (HRS)). This project is a continuation of the first measurement
of the performance of the Belgian health care system, which was published in 2010 [4]. The ongoing
study serves to confirm the pertinence of the indicators identified. It will also fill the gaps with regard to
patient orientation, continuity of care and the approach to particular patient groups. At the same time
special attention is given to health promotion with its specific indicators and interactions with other
areas. The transversal concept of ‘fairness’ is also the object of a specific analysis. Finally it will also
look into whether the global performance can be measured. More information about this continuing
study can be found on the website of the Federal Knowledge Centre, KCE (www.kce.fgov.be).
163

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