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Capturing the personal impact of chronic illness: the example of rheumatoid arthritis

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Academic Rheumatology Dept, UWE. Prof Sarah Hewlett, Prof Michael Calnan, ... OMERACT (Outcome Measurement in Rheumatology Clinical Trials) Patient Perspective ... – PowerPoint PPT presentation

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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

2
Structure
  • 1. Current measures of disability disease
    activity (biological body)
  • 2. Inclusion of values adaptation in clinical
    assessment (lived experience)

3
Rheumatoid arthritis (RA)
Image from arthritis.about.com
4
Treatment
5
Assessment of RA
Outcomes are discrete or binary events (Wolfe
2002)
6
Measuring 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

7
Measuring 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

8
Standardisation 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

9
Standardisation of assessment
  • ACR core set for RA (Felson 1993)
  • Drs assessment of disease activity
  • Patients assessment of pain
  • Patients assessment of physical function

10
Where is the lived experience?
  • Shifting
  • perspectives
  • model

Biographical disruption
Normalisation
Response shift
11
(No Transcript)
12
Seeds for my research
  • Qualitative studies
  • OMERACT (Outcome Measurement in Rheumatology
    Clinical Trials)
  • Patient Perspective workshop
  • Well-being
  • Patient priorities

13
Aims
  • Explore the meanings of
  • feeling well
  • maintaining / returning to
  • a normal life
  • Develop a patient-generated core set of measures

14
More 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

15
Wellness 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)

16
Components of well-being
Feeling well
Living in the body
Being in the world
Feeling well
Being in the mind
Adapting to illness
17
Normality 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)

18
Model of normality
Disrupted normality
Return to normality?
Maintaining normality
Resetting normality
19
What outcomes are important?
  • 63 outcomes described
  • Minimising the impact of RA
  • RA under control
  • Doing things
  • Emotional health
  • Coping with illness

20
Importance 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)
21
What is most important?
  • 8 outcomes statistically selected for patient
    core set
  • Inclusion of context (personal importance)
    adaptation from theoretical framework

22
Most 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
23
Patient core set informed by theory
  • Leventhal (1984)
  • Disease
  • Emotional reaction
  • Coping evaluation
  • Bury (1988)
  • Consequence significance

24
Capturing 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)

25
Personal 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

26
Disease 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
27
Capturing 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
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