1. Conceptual Foundations for Health Measurements

2. Disability and Handicap
Examples of Conceptual Foundations for Measurement Scales

3. Three Perspectives: Disease, Sickness & Illness
(Underlying pathology;
biologically defined: the
practitioner’s perspective.
The illness seen in terms of
a biological theory of disorder)
Illness
(The person’s
subjective
experience
of their symptoms.
What the patient brings
to the doctor)
Sickness
(Social & cultural conceptions of the condition: cultural beliefs and reactions such as fear or stigma. These affect how the patient reacts, and also what is considered a disorder suitable for medical treatment)
Disease = biomedical representation of a condition in terms of etiology, symptom complexes & biological explanations.
Every culture has beliefs about health and disease; these are learned by individuals, who incorporate these beliefs (fear of cancer; belief that thinness is desirable, etc) into their presentation of symptoms to the doctor. So, the underlying disease is filtered through cultural perceptions to produce the illness as presented to you.
This sometimes leads to phenomena such as “the hidden diagnosis” – the idea that a patient sometimes comes to you with a symptom that is not what they actually want to discuss, but they are afraid to raise the real issue (their parents are fighting; they fear they may have an incurable condition, etc).
Sickness = more diffuse societal view of the diagnostic label. E.g. what does “cancer” mean to people? The answer varies hugely according to their culture
The Illness = the individual’s reaction to the disease, as modified by social & cultural expectations
The good MD has to be aware of each level. Insufficient to treat only the disease without treating how it is affecting the patient.
Sometimes, cultural views affect our classification of disease: Thomas Szasz spoke of the myth of mental illness 3

4. WHO Classifications International Classification of Diseases (ICD)
Etiological framework
Diagnosis of health condition
Disease process, signs & symptoms
International Classification of Impairments, Disabilities & Handicaps (ICIDH)
How people live; body functions
Framework to describe activities & participation
Covers non fatal outcomes

5. Conceptions of Disability
“a disability is any restriction or lack of ability (resulting from an impairment) to perform an activity in the manner or within the range considered normal for a human being” (WHO International Classification of Impairments, Disabilities, and Handicaps, 1980.)

6. ICIDH* - 1 Impairment Disability Handicap Internal, body Applied
Societal
(N.b. dotted arrows indicate that one stage may, but need not, influence the next)
* International Classification of Impairment, Disability & Handicap

7. Issues in the Definition
Defining disability in terms of activity limitations is neat, but what activities?
What level of limitation should be used?
Same expectations for everyone, or relative to age, sex, etc.?
Threshold: does not perform an activity, versus cannot perform it? Maybe doesn’t, but could?

8. ICIDH - 2 Appeared March, 2001 Conceptual changes:
From consequences of disease (1980) to components of health (2000)
Uses more positive language (‘activity’ & ‘participation’ instead of ‘disability’ & ‘handicap’)
Broadens concept of disability
More on environmental factors in which the person lives

9. ICIDH - 2 Health Condition (disorder / disease) Body Functions
& structures
Activities
Participation
BODY
Structure &
Function
PERSON
Activities
SOCIETY
Participation
impairment
limitation
restriction

10. Body Functions Mental functions Sensory Voice & speech
CVD, hematological, etc.
Digestive, metabolic & endocrine
Genitourinary
Neuro-musculoskeletal
Skin

11. Activities & Participation
Learning
Communication
Movement
Self-care
Domestic activities
Interpersonal
Major life activities
Community
Exchanging information
Communicating
Mobility
Personal maintenance
Home life
Social relationships
Work & employment
Social & civic life

12. Low negative affect High negative affect
A ‘Circumplex’ Model
High positive affect
active, elated, excited
Strong
engagement
Pleasantness
content, happy, satisfied
aroused, astonished, concerned
Low
negative
affect
High negative affect
relaxed, calm,
placid
distressed,
fearful,
hostile
April 8, 2004.
This is intended to go with the discussion on Bradburn’s 2-factor model.
Source:
Adapted from Tellegen A. Structures of mood and personality and their relevance to assessing anxiety, with an emphasis on self-report. In Tuma AH, Maser JD (eds.) Anxiety and the anxiety disorders. Hillsdale, NJ: Erlbaum, 1985.
inactive, still, quiet
sad,
lonely,
withdrawn
sluggish, dull, drowsy
Disengagement
Unpleasantness
Low positive affect

13. Health-Related Quality of Life
QoL is deliberately subjective & value-specific
Invented in the USA
How universally applicable is it?
Definition will surely vary across cultures (naïve early enthusiasm for QoL as final outcome)
Handicap reflects impairment + environment, so measures may perform differently in different environments

14. Quality of Life (from a consumer’s perspective)
Quality of life is…
“Having the important people in your life see your strengths and talents”
“A good night’s sleep”
“Validation of worth and affirmation of experience”
“Having control of your own life”
“Taking control of your health condition”
“Life free from stigma”
“Having a ‘real’ job”
“Having a purpose”
“Being free to come and go”
Carne, B. A consumer perspective. Can J Community Mental Health 1998, Suppl 3: 21.

15. The Deceptive Simplicity of HRQOL…
Health-Related Quality of Life
Or Quantity?
(How would we
we measure
quality?)
Definition?
What model?
(Caused by
Associated with?
or ?)
Of life or
Living?

16. Mapping Physical Measures onto Quality of Life
Clinical / Physical Markers
(the clinician’s concern)
cover part of
Disease-Specific Dysfunction
cover part of
Health-Related Quality of Life
cover part of
Overall Quality of Life
(the patient’s concern)
Source: SH Kaplan et al. Medical Care, 2000