Webinar 4

Webinar 4
Vasculitis - Managing Stress & Fatigue
With:
Dr Linda Papadopoulos
Dr Neil Basu
& patient case study from Jackie Sullivan
Presented by:
Paul Murricane
Webinar 4
Vasculitis - Managing Stress & Fatigue
Take Our Poll on Anxiety & Stress
Webinar Panel
Webcast Presenter: Paul Murricane
Patient Case Study: Jackie Sullivan diagnosed with MPA in 2009
Dr Linda Papadopoulos, High Profile Media Psychologist
Dr Neil Basu, Senior Clinical Lecturer & Honorary Consultant
Rheumatologist at the University of Aberdeen.
Patient Case Study Interview: Jackie Sullivan
Former Counsellor and diagnosed with Microscopic Polyangiitis
(MPA Vasculitis) in 2009
Patient Case Study Interview: Jackie Sullivan
•Overview of MPA Vasculitis.
•The thoughts & fears at diagnosis.
•The daily challenges with Vasculitis.
•Impact on carers or close family.
Interview with: Dr Linda Papadopoulos
High profile media psychologist with published research in the
field of counseling and medical psychology
Interview with: Dr Linda Papadopoulos
Topics Covered:
•The patient’s psychological journey at diagnosis.
•The impact on close family & friends.
•Coping strategies post diagnosis for Vasculitis patients.
•Reducing stress & developing positive mental wellbeing.
Webinar 4
Vasculitis - Managing Stress & Fatigue
Take Our Poll on Fatigue
Presentation: Dr Neil Basu
Senior Clinical Lecturer & Honorary Consultant Rheumatologist
at the University of Aberdeen. Presentation will discuss the
patient centered research in Vasculitis that focuses on fatigue.
Patient centred research in
vasculitis
Dr. Neil Basu
Senior Clinical Lecturer & Honorary Consultant
Aberdeen, UK
Research across patient’s journey
• Development of disease
• Diagnosis
• Treatment
• Monitoring
• Management of consequences
Vasculitis
Previous work
• Greatest burden of disease
– Fatigue
– General Pain
– Renal Failure
– Oxygen dependency
Patient-reported outcome assessment in vasculitis provides important data and a unique perspective P-XIV-152 (SA) Clin
Exp Rheumatology Vol. 25 no.1, 2007(suppl.44)
Quality Of Life
• What is it ?
• Why measure it ?
• How to measure ?
Aims
• To characterise QOL in AAV
• To contextualise QOL in AAV
• To identify and quantify the determinants of QOL in
AAV
Patients
• Multi-centre
– Granulomatosis Polyangiitis (Wegener’s)
– Microscopic Polyangiitis
– Churg-Strauss Syndrome
Comparison groups
• General population
• Disease
– Inflammatory arthritis
– Non-inflammatory CKD
Questionnaire
• Quality of life measure : SF36
• Psychosocial factors
–
–
–
–
–
–
–
Fatigue
Pain
Anxiety
Depression
Sleep Disturbance
Coping
Employment
Clinical variables
•
•
•
•
•
•
•
Disease activity
Disease damage
Disease duration
Other medical problems
Medications
Patients symptoms
Blood tests
Case Recruitment
Non
Response
Site
Responders
Responders
rate (%)
Birmingham
114
8
93
Grampian
77
7
92
Edinburgh
54
9
83
Oxford
41
11
79
Cambridge
32
6
84
Reading
30
10
75
London
27
18
60
Fife
19
4
83
Dundee
16
3
84
Total
410
76
84
SF36: AAV versus General
Population
PF
100
MH
80
RP
60
40
AAV
20
RE
BP
0
SF
GH
VT
Population
controls
SF36: AAV versus Disease
controls
PF
100
MH
80
RP
60
40
20
RE
BP
0
SF
GH
VT
Disease controls
AAV
Independent associations of poor
QOL
Possible model for AAV fatigue
Conclusions
• QOL of vasculitis is significantly impaired
compared with the general population
• QOL of vasculitis is similar to other chronic
conditions whose significant needs are already
recognised
• Poor QOL is principally associated with fatigue.
• High fatigue is principally associated with sleep
disturbance and pain
Fatigue Management Programme
• Interventions
– Exercise
– Behavioural
• Specialists
–
–
–
–
Physiotherapy
Psychology
Nursing
Occupational Therapy
• Delivery
– Group
– One on one
Fatigue outcomes
Exercise outcomes
Qualitative outcomes
• ‘I can’t believe what I am able to do now’
• ‘My colleagues at work assume my steroids have
been increased!’
• ‘I feel more optimistic about the future now’
• ‘I feel exhilarated’
• ‘A major turn around I never thought would be
possible’
Where does fatigue come from?
Brain activation in response to
fatiguing cognitive task (PASAT)
Functional differences: fatigued cases
versus non-fatigued cases
Conclusions
•
•
•
•
QOL is a large issue amongst patients with AAV
Optimal disease management
Bio-psychosocial approach
No suggestion of sub-clinical CNS vasculitis to
account for fatigue
• In the future MRI techniques may provide insight to
the mechanisms of fatigue
Acknowledgements
• Supervisors: Gary Macfarlane, Gareth Jones,
David Reid
• Collaborators: Alison Murray, Gordon Waiter, Lars
Erwig, Raashid Luqmani, David Jayne, Oliver
Flossmann; Mark Little, Lorraine Harper, Andrew
MacLean, Nicole Amft, Bean Dhaun, John
McLaren, Vinod Kumar
• Funder: CSO
YOU !!
Webinar 4
Vasculitis - Managing Stress & Fatigue
Poll Results
&
Q&A