©DermaZentrum Bad Soden/Ts.

€DermaZentrum Bad Soden/Ts.
Medico Palais
Dr. med. Isabel Fell
Ten years experience in atopic dermatitis with the German
Atopic Dermatitis Education Programmes (AGNES)
Surgery:
Hautmedizin Bad Soden
Kronberger Str. 2
D-65812 Bad Soden/Ts.
Fon: 0049 (0) 6196 - 651 55 0
Fax: 0049 (0) 6196 - 651 55 30
Educational Center
Dermatologisches Zentrum f•r
Rehabilitation und Pr‚vention
Bad Soden GmbH
Medico Palais
Parkstraƒe 6
D - 65812 Bad Soden am Taunus
Fon: 0049 (0) 6196 - 76851 0
Fax: 0049 (0) 6196 - 76851 25
Mainz
€DermaZentrum Bad Soden/Ts.
Medico Palais
Dr. med. Isabel Fell
Outline
• Chronic inflammatory skin diseases like atopic
dermatitis and consquences for patients and their
physicians
• Results of German Atopic Dermatitis Intervention
Study (GADIS )
• Investigative report about itch intensity evaluated
in the GADIS
• Investigation of educated patients (2006 -2008)
after two respectively three years - some results
€DermaZentrum Bad Soden/Ts.
Medico Palais
Dr. med. Isabel Fell
Numbers and facts
• In total there are about 12000 patients in
our surgery in a year
• 10% of them have the diagnosis „atopic
dermatitis“
• Almost half of these patients are children
and adolescents in the age from 3 month
up to 18 years
• About 20% take part in the educational
programmes AGNES/(ADP) ARNE every
year
€DermaZentrum Bad Soden/Ts.
Medico Palais
Dr. med. Isabel Fell
Kortison?
€DermaZentrum Bad Soden/Ts.
Medico Palais
Dr. med. Isabel Fell
We have to consider
• Atopic dermatitis (AD) is one of the most common
inflammatory skin diseases and has an increasing
prevalence.
• 70% of cases it start during infancy or early childhood
• Course is chronic or chronically relapsing.
• Multifactorial aetiology (genetic, environmental,
lifestyle and psychological factors)
• Itch is often reported to be the most bothersome
aspect of AD
• Symptoms, such as itching, scratching and
sleeplessness, can be a burden on the whole family
(Williams HC. Atopic dermatitis. N Engl J Med 2005; 352: 2314–2324; Ehlers A et al, Treatment of atopic dermatitis: a comparison of psychological and dermatological approaches
to relapse prevention. J Concult Clin Psychol 1995; 63: 624–635; McCuaig C. The itch that rashes: an update on atopic dermatitis. Can J Diagnosis 2003; 20: 69–76;
Fivenson D, Arnold RJ, Kaniecki DJ, The effect of atopic dermatitis on total burden of illness and quality of life on adults and children in a large managed care organization.
J Manag Care Pharm 2002; 8: 333–342; Ben-Gashir MA. Relationship between quality of life and disease severity in atopic dermatitis/eczema syndrome during childhood.
Curr Opin Allergy Clin Immunol 2003; 3: 369–373)
€DermaZentrum Bad Soden/Ts.
Medico Palais
Dr. med. Isabel Fell
„…Reasons, why physicians are much less
satisfied with their lot now, than they where
10 years ago…“
(Linzer et al, 2000, McMurray et al, 200, Wettereck et al 2002, Visser, 2003)
• „… insurance
concerns…“
• „…the need to see
mor e patients in
less time…“
€DermaZentrum Bad Soden/Ts.
Medico Palais
Dr. med. Isabel Fell
Patients (not only patients suffering
from AD) enter our office with certain
expectations
(Sanchez-Menegay and Stadler, 1994)
•
•
•
•
94% expect a diagnosis
82% expext information about the pr ognosis
76% ask how to pr event illness
80% expects to receive continuing car e
fr om the same physician
€DermaZentrum Bad Soden/Ts.
Medico Palais
Dr. med. Isabel Fell
We do not take those
expectations in account
(Jackson et al, 2001)
We end up doing more and
communicating less!
We give out more medications than
patients expect and cut short the
discussion they value so much!
€DermaZentrum Bad Soden/Ts.
Medico Palais
Dr. med. Isabel Fell
The health care system in Germany
does not picture the expectations of our
patients
Lack of information, overstrain,
helplessness, and lack of confidence in
medical treatment lead to suboptimal
management of the disease and increasing
use of health care resources, including
alternative therapies
€DermaZentrum Bad Soden/Ts.
Medico Palais
Dr. med. Isabel Fell
How can we solve this problem?
They come by themselves
or by recomendation
After therapy in hospital
From colleauges
for example pediatrics
Adequate dermatological treatment
children 0-7 years
•
•
•
•
children 8-12 years
adolescents 13-18
Fix the diagnosis: atopic dermatitis
Change the local basic therapy
Give instructions how to clean the skin (shower, bath!)
Explain how to treat the skin and start a treatment
according to the guidelines (they all have a cortison an a
fatcreme, but they don‘t know how to use it)
€DermaZentrum Bad Soden/Ts.
Medico Palais
Dr. med. Isabel Fell
Information about topical and systemic treatment modalities
allergol.
diagnostic
Intensive
medical
treatment
AGNES
educational programmes
(6 ‰ 2 h once weekly)
•
•
•
Psychological treatment
Individual guidance
from dietitians
€DermaZentrum Bad Soden/Ts.
Medico Palais
Dr. med. Isabel Fell
Dermatologie:
Spezial surgery
Individual treatment
Bath and UV-Therapie
Multiprofessional team with experience
in atopic dermatitis is necessary!
To practice the
educational
programmes
and to get them
paid fom the
insurance
companies
special
requirements
have to be
fulfilled
Dermatologist
or Pediatrician
40 hour training
programme to get
trainers
Psychologist or
Physician of
Psychosomatic
Medicine/
Psychiatrist
Nutrition
specialist
1 day training
programme
Dietitian
€DermaZentrum Bad Soden/Ts.
Medico Palais
Dr. med. Isabel Fell
The interdisciplinary approach of the
German Eczema School Programm
Managing
Atopic
Dermatitis
Educational
Programmes
in Germany is
well organized
in AGNES
(German Task
Force on
Educational
Programmes
for AD)
1
…National Group of Atopic Dermatitis Education
Annual congress for Education (> 400 members)
2
…10 Academies in Germany (Train-the-Trainer)
3
…Atopic Dermatitis Education centers (> 250)
4
…Special Education for nutrition specialists
(1 day course)
5
6
…Quality management programme in every country
in Germany (responsible for education)
…Standardized manual book for every trainer
AGNES
ARNE =
Adults
AGATE =
Anaphylaxis
€DermaZentrum Bad Soden/Ts.
Medico Palais
Dr. med. Isabel Fell
History of German Atopic Dermatitis School
2006
Contracts
with insurances
companies
Final paper
2004
GADIS study
2004
Experiences
train-the trainer workshops
founded in 2000. s founded
in 2000
Foundation of AGNES
development of manuals
€DermaZentrum Bad Soden/Ts.
Medico Palais
Dr. med. Isabel Fell
2003
2000-2003
Within the progammes of AGNES the costs are
covered by the insurance companies
409,- €
•for parents (0-7 years)
•adolescents (13-18)
619,- €
•children (7-12)
and their parents
€DermaZentrum Bad Soden/Ts.
Medico Palais
Dr. med. Isabel Fell
GADIS:
In GADIS – German atopic dermatitis
intervention study - a randomized
prospective controlled trial, the effectiveness
of AD group intervention programmes in
parents of children with AD aged 0–7 years,
parents of children aged 8–12 years and
adolescents aged 13–18 years were studied
compared with a control group
(www.neurodermitisschulung.de)
€DermaZentrum Bad Soden/Ts.
Medico Palais
Dr. med. Isabel Fell
Sylt, Scheewe et al
Osnabr•ck, Szczepanski
Berlin, Wahn et al
Hannover, Werfel et al
KŒln, Wolf und Wittenmeier
Giessen, Gieler et al
Erlangen, Fartasch et al
Heidelberg, Diepgen et al
M•nchen, Ring et al
€DermaZentrum Bad Soden/Ts.
Medico Palais
Dr. med. Isabel Fell
The teaching programmes
(6 ‰ 2 h once weekly with
5-8 participants)
• basic medical information
about topical and systemic treatment
modalities
• itch-scratch cycle
• coping with scratching and sleep
disturbances
• food allergy and food intolerance.
€DermaZentrum Bad Soden/Ts.
Medico Palais
Dr. med. Isabel Fell
Participants
1010
Drop Out
T0/1
12 * SCORAD before education <20
6 * took part in less than 50% of the
education progamm
992
After losses during
follow-up, the number
of participants was
T2
T3
intervention
group
446
703
823
377
control
group
€DermaZentrum Bad Soden/Ts.
Medico Palais
Dr. med. Isabel Fell
Outcome measures:
Primary endpoints were:
• differences in severity of
eczema
• parents’ quality of life
(Qol)
€DermaZentrum Bad Soden/Ts.
Medico Palais
Dr. med. Isabel Fell
The SCORAD scale
was used to grade the severity of AD
(in the treatment groups and in the control groups before and after
the education programmes)
(European Task Force on Atopic Dermatitis. Severity scoring
of atopic dermatitis: the SCORAD index. Dermatology
1993; 186: 23–31.)
based on:
• extent of eczema
• morphology of lesions
objective SCORAD
• 2 subjective parameters: “sleep disturbance during the night”
and “itch” measured in visual analogue scales (VAS) ranging
from 0 to 10
€DermaZentrum Bad Soden/Ts.
Medico Palais
Dr. med. Isabel Fell
Significantly higher decrease of the SCORAD one year after
participation in the educational program
SCORAD
SCORAD
43.1
41.8
45
41.1
40.4
40.4
40.6
35.2
40
32.6
35
28.4
25.8
30
23.4
23.7
25
20
T0
T1
T0
T1
T0
T1
T0
T1
T0
T1
T0
T1
Intervention Control group
group
Intervention Control group
group
Intervention Control group
group
0 – 7 years
8 – 12 years
13 – 18 years
N = IG 102, CG 83
N = IG 69, CG 50
N = IG 274, CG 244
€DermaZentrum Bad Soden/Ts.
Medico Palais
Dr. med. Isabel Fell
Parents’ Qol of children aged less than 13 years
•Measured with the German questionnaire
“ Quality of life in parents of children with
atopic dermatitis.”
•It consists of 26 items, which can be divided into
five interpretable subscales:
1. psychosomat ic well being
2. effects on social life
3. confidence in medical t reatment
4. emotional coping
5. acceptance of the disease
(Von R„den U, Development and validation of a disease specific questionnaire on quality of life of parents of children with
atopic dermatitis. Z F Gesundheitswiss 1999;4:335-50.)
€DermaZentrum Bad Soden/Ts.
Medico Palais
Dr. med. Isabel Fell
Range von (5 bis 25)
Parents’ questionnaire:
life quality (Qol)
Elternbogen:
Lebensqualit•t
Zufried.
mit in
med.
Versorg.
Confidence
medical
reatment
22
Intervention group
Schulungsgruppe
p<0,0001
Kontrollgruppe
Control group
21
20,0
20
p<0,0001
20,1
19
17,8
18
17,0
17
16
17,5
17,4
16,0
15,8
15
T0
T3
T0
years
0-7 Jahre
(SG=252;KG=231)
T3
years
8-12 Jahre
(SG=85;KG=64)
€DermaZentrum Bad Soden/Ts.
Medico Palais
Dr. med. Isabel Fell
Investigative report:
…
about itch intensity evaluated in the German Atopic
Dermatitis Intervention Study (GADIS)
(Elke Weisshaar et al Acta Derm Venereol 2008; 88: 234–239)
She investigated whether the itch severity obtained
in the scoring of atopic dermatitis (SCORAD)
correlates with quality of life and coping behavior
in children and parents.
€DermaZentrum Bad Soden/Ts.
Medico Palais
Dr. med. Isabel Fell
„The symptoms, such as itching,
scratching and sleeplessness, can be a
burden on the whole family….”
€DermaZentrum Bad Soden/Ts.
Medico Palais
Dr. med. Isabel Fell
Elements in the education programme
to cope with the sensitation of itch
Anti-itch
Lokal therapy
Stress relaxation
techniques and
„scratch-alternatives“
Oral Antihistamine?
inflammation
Therapy against skin
inflammation
„ …Dryness of skin leads to itch and burning
(stress leads to itch
Allergy leads to itch...)“ Giudelines of AD
€DermaZentrum Bad Soden/Ts.
Medico Palais
Dr. med. Isabel Fell
Results - Investigative Report
•There were significant but low correlations between
the severity of atopic dermatitis and the itch intensity
•Itch and sleeplessness were significantly correlated
•Significant correlations of itch with the coping
behaviour and quality of life in parents of children with
atopic dermatitis were measured
•Quality of life in children (8–12 years) and adolescents
(13–18 years) showed a significant negative correlation
with itch intensity.
€DermaZentrum Bad Soden/Ts.
Medico Palais
Dr. med. Isabel Fell
Results - Investigative Report
Quality of life, itch intensity
and coping strategies should
be considered when treating
patients with atopic
dermatitis.
€DermaZentrum Bad Soden/Ts.
Medico Palais
Dr. med. Isabel Fell
Take home massage
• age-related educational programmes are effective in the longterm management of atopic dermatitis
• Educational programmes improve the severity of eczema
according to scoring of atopic dermatitis scale (SCORAD)
• Quality of life, itch intensity and coping strategies should
be considered when treating patients with atopic dermatitis
• Patient education leads to confidence in medical treatment
• Effective treatment of the eczema might have an influence on
the course of the severity of the disease?
• Educational programmes are a chance for physicians
to work cost-effektive
€DermaZentrum Bad Soden/Ts.
Medico Palais
Dr. med. Isabel Fell
€DermaZentrum Bad Soden/Ts.
Medico Palais
Dr. med. Isabel Fell