Title: Capturing the personal impact of chronic illness: the example of rheumatoid arthritis
1 Capturing the personal impact of chronic
illness the example of rheumatoid arthritis
- Tessa Sanderson
- Academic Rheumatology Dept, UWE
- Prof Sarah Hewlett, Prof Michael Calnan,
- Dr Marianne Morris Pam Richards
2Structure
- 1. Current measures of disability disease
activity (biological body) - 2. Inclusion of values adaptation in clinical
assessment (lived experience)
3Rheumatoid arthritis (RA)
Image from arthritis.about.com
4Treatment
5Assessment of RA
Outcomes are discrete or binary events (Wolfe
2002)
6Measuring disability
- Health Assessment Questionnaire (HAQ) (Fries
1980) - Measures functional disability
- Dressing grooming Hygiene
- Rising Reach
- Eating Grip
- Walking Activities
- Without ANY Unable
to do - difficulty
7Measuring disability
- Valued life activities scale (Katz 2006)
- Obligatory activities (5 items)
- Committed (8)
- e.g. housework / shopping / taking care of
family - Discretionary (13)
- e.g. visiting friends / hobbies
8Standardisation of assessment
- Disease activity score (DAS) (van der Heijde
1993) - tender joint count (TJC)
- swollen joint count (SJC)
- erythrocyte sedimentation rate (ESR)
- patient opinion of disease activity
- No activity
Extremely - at all active
9Standardisation of assessment
- ACR core set for RA (Felson 1993)
- Drs assessment of disease activity
- Patients assessment of pain
- Patients assessment of physical function
10Where is the lived experience?
- Shifting
- perspectives
- model
Biographical disruption
Normalisation
Response shift
11(No Transcript)
12Seeds for my research
- Qualitative studies
- OMERACT (Outcome Measurement in Rheumatology
Clinical Trials) - Patient Perspective workshop
- Well-being
- Patient priorities
13Aims
- Explore the meanings of
- feeling well
- maintaining / returning to
- a normal life
- Develop a patient-generated core set of measures
14More than absence of depression...
- Dieners subjective well-being
- Ryffs psychological well-being
- Benefit-finding, sense-making, impact of life
events / stressors, locus of control, illness
perceptions
15Wellness RA
- Well-being is being full of life, not tired, not
hurting and also walking, how I walk. (AT) - If you dont have any pain in your body, it
makes you feel so much alive and better. (AO) - Its well-being very dependent on your
physical side and that in turn gives drive to how
you feel emotionally, its very interlinked. (AB)
16Components of well-being
Feeling well
Living in the body
Being in the world
Feeling well
Being in the mind
Adapting to illness
17Normality RA
- I dont feel that Im walking round with this
heavy burden on me, but I dont feel normal
again. (AH) - The things that I cant do, I work around and
then that becomes the new normality. (AG)
18Model of normality
Disrupted normality
Return to normality?
Maintaining normality
Resetting normality
19What outcomes are important?
- 63 outcomes described
- Minimising the impact of RA
- RA under control
- Doing things
- Emotional health
- Coping with illness
20Importance of context
Symptoms
Functional disability (e.g. permanent joint
damage)
Emotional impact
Adaptation (e.g. health expectations changed)
Personal impact on patient
Decision-making
Outcomes prioritised
Treatment preferences (e.g. side effects,
surgery)
Self- management resources (e.g. social support,
ability to control pain)
Life stage (e.g. ability to fulfil social roles,
necessity)
21What is most important?
- 8 outcomes statistically selected for patient
core set - Inclusion of context (personal importance)
adaptation from theoretical framework
22Most important outcomes x personal
Global well-being / Quality of life
Pain Joint damage Everyday activities (incl.
driving working) Independence Enjoyment of
life Mobility Fatigue Valued activities
Severity of impact
Importance of impact
Coping
23Patient core set informed by theory
- Leventhal (1984)
- Disease
- Emotional reaction
- Coping evaluation
- Bury (1988)
- Consequence significance
24Capturing illness in the patient core set
- Biological body Experience of condition (pain,
fatigue) - Functional body Importance of ability (everyday
activities, independence, mobility, valued
activities) - Lived body Psychological ability to live with RA
(avoid joint damage, enjoy life)
25Personal Impact HAQ
- Measures functional loss
- Measures individual values for functions
- Weights level of individuals functional loss
- personal impact of disability
- (Hewlett 2002)
- Needed for all outcomes
26Disease activity joint damage
Level of global well-being
Important treatment outcomes
Patient core set Pain Everyday
activities Joint damage Mobility Enjoyment of
life Independence Fatigue Valued activities
Adaptation Including Perceptions of
normality Coping skills/ self-management Self-ef
ficacy Illness perceptions
27Capturing the personal impact
- Move from biological
- Focus on controlling disease
- Illness as synonymous with disease activity
- Towards the lived experience
- Include personal importance adaptability in RA
assessment