Session 4 - Chronic Illness and Health Related QoL

Question 1

How chronic illnesses usually onset?

Answer 1

• Symptoms can be striking
• More often they are slow in their onset
• Other explanations for the symptoms are often available

Question 2

What is biographical disruption?

Answer 2

Biographical disruption is a key sociological concept, identifying chronic illness as a major disruptive experience.

Question 3

What is an illness narrative?

Answer 3

Much sociological research on chronic illness is based on people’s narratives of their illness. These narratives offer a way of making sense of the illness, and they perform certain functions.

Question 4

What work goes into chronic illness? 5 things

Answer 4

1. Illness work - symptom managment
2. Everyday life work - managing daily life
3. Emotional work - Managing emotions and those of others
4. Biographical work - loss and reconstruction of self
5. Identity work - Work to maintain an acceptable identity

Question 5

Define stigma

Answer 5

A negatively defined condition, attribute, trait or behaviour conferring “deviant” status; a “spoiled” identity.

Question 6

What is descreditable stigma?

Answer 6

The stigma is yet to be revealed. It may be kept secret, revealed intentionally by the patient or by some factor the patient cannot control

Question 7

What is discredited stigma?

Answer 7

Physically visible characteristic or well-known stigma that sets patient apart

Question 8

What is enacted stigma?

Answer 8

Discrimination has actually occurred

Question 9

What is felt stigma?

Answer 9

Discrimination has not actually occurred, felt stigma is the fear of it

Question 10

What is medical model of disability?

Answer 10

• Disadvantages are a direct consequent of impairment and disabilities
• Medical intervention needed to cure or help

Question 11

What is the social model of disability?

Answer 11

• Disability = A form of social oppression
• Disadvantages are a product of environment and its failure to adjust
• Political action and social change needed to help

Question 12

According to ICIDH what is impairment?

Answer 12

Concerned with abnormalities in the structure of the functioning body

Question 13

According to ICIDH what is disability?

Answer 13

Concerned with the performance of activities

Question 14

According to ICIDH what is a handicap?

Answer 14

Concerned with broader social and psychological consequences of living with impairment and disability

Question 15

Give 3 reasons to measure health

Answer 15

• Target resources where they are most needed
• monitor patients progress
• Evaluate quality of health services

Question 16

What are some forms of patient based outcomes?

Answer 16

Health related quality of life (HRQoL)

Patient reported outcome measures (PROM)

Question 17

What are patient based outcomes?

Answer 17

Attempts to assess well being from patient perspective

Question 18

What are the 2 main methods of measuring HRQoL? give examples of each. What are the pros and cons of each?

Answer 18

Qualitative (Non numerical data e.g. 1 on 1 discussion) and quantitative (numerical data which can include questionnaires)

Qualitative:

• Pros - Good for initial looks at hrqol
• Cons - resource hungry, not easy to use in evaluation

Quantitative:

• Pros - easy to use in evaluation, less resource hungry

Question 19

Define reliability and validity,

Answer 19

Reliability - Same score each time?

Validity - Is instrument measuring what it shoud?

Question 20

What is the difference between a generic and specific instrument?

Answer 20

Generic - Can be used with any population (including healthy people), generally cover perceptions of overall health

Specific - Disease specific, site specific, dimension specific

Question 21

Give an example of a generic instrument and a specific instrument

Answer 21

Generic - SF-36

Specific - Oxford hip score

Question 22

What are the advantages and disadvantages of specific instruments?

Answer 22

Advantages:

• very relevant content,
• sensitive to change
• acceptable to patients.

Disadvantages:

• cannot be used with people who don’t have the disease,
• comparison is limited
• they may not detect unexpected effects.