5) Chronic Illness and Health-Related Quality of Life

Question 1

Why should we measure health?

Answer 1

• Indication of the need for healthcare
• Target resources where they are most needed
• Assess the effectiveness of health interventions
• Evaluate the quality of health services
• To use evaluations of effectiveness to get better value for money
• To monitor patients’ progress

Question 2

What ways do we have to measure health?

Answer 2

• Mortality
• Morbidity
• Patient-based outcomes

Question 3

What are the advantages and disadvantages of using mortality to measure health?

Answer 3

-Easily defined, but, not always recorded
accurately
-Not a very good way of assessing outcomes and quality of care

Question 4

What are the advantages and disadvantages of using morbidity to measure health?

Answer 4

• Routinely collected e.g. disease registers, hospital episode statistics
• Collection not always reliable/accurate
• Tells us nothing about patients’ experiences
• Not always easy to use in evaluation

Question 5

Suggest some possible uses of the data from patient based outcomes.

Answer 5

• Used to assess benefits in relation to cost
• Used in a clinical audit
• Used to measure health status of populations
• Used to compare interventions in a clinical trial
• Used as a measure of service quality

Question 6

Define health-related quality of life.

Answer 6

The functional effect of an illness and its consequent therapy upon a patient, as perceived by the patient

Question 7

Suggest some things that are included in the idea of the patient’s perspective on their health-related quality of life?

Answer 7

• Physical function (what can they/what can’t they do)
• Symptoms (effect of symptoms on life)
• Global judgements on health
• Psychological wellbeing (anxiety, depression)
• Social wellbeing (relationships)
• Cognitive functioning (alertness, thinking)
• Personal constructs (body image)
• Satisfaction with care

Question 8

What are the two main properties of PROMs?

Answer 8

• Reliability (should keep giving the same score over time if nothing changes)
• Validity (is it measuring what you want it to measure)

Question 9

What is the relationship between health-related quality of life (HRQoL) and PROMs?

Answer 9

PROMs are a measure of health-related quality of life (HRQoL)

Question 10

Suggest some benefits of the SF-36.

Answer 10

• Acceptable to people
• Only takes 5-10 minutes to complete
• Has good reliability
• Responsive to change

Question 11

Why might the EQ-5D be a better tool than SF-36?

Answer 11

It groups all the dimensions to come to a single answer as opposed to the many dimensional answers.

Question 12

What are the two main generic instruments for the measurement of HRQoL?

Answer 12

• SF-36

- EQ-5D

Question 13

Suggest some benefits of the EQ-5D.

Answer 13

• Good population data is available

- Well validated and tested for reliability

Question 14

Briefly describe the EQ-5D.

Answer 14

-Five dimensions (Mobility, self-care, usual activities, pain/discomfort, anxiety/depression)
-Three levels for each dimension:
+No problems
+Some/moderate problems
+Extreme problems

Question 15

Suggest some of the advantages of using specific instruments for the measurement of HRQoL?

Answer 15

• Very relevant content
• Sensitive to change
• Acceptable to patients

Question 16

Suggest some of the disadvantages of using specific instruments for the measurement of HRQoL?

Answer 16

• Cannot be used with people who don’t have the disease
• Comparison is limited
• May not detect unexpected effects

Question 17

What are the three main types of specific instruments that can be used for the measurement of HRQoL?

Answer 17

• Disease specific (asthma quality of life questionnaire, arthritis impact measurement scale (AIMS)
• Site specific (oxford hip score, shoulder disability questionnaire)
• Dimension specific (Beck depression inventory, McGill pain questionnaire)

Question 18

Why might patient based outcomes in healthcare be on the rise?

Answer 18

• Increase in conditions where the aim of treatment is management rather than curing
• Mid-Staff (and others) failing
• Iatrogenic effects of care

Question 19

Compare and contrast the use of qualitative and quantitative methods to measure HRQoL?

Answer 19

• Qualitative methods are good really good for a first look at HRQoL. However, they are resource hungry and not easy to evaluate
• On the other hand, quantitative measures give much more specific answers. (they can be split into generic and specific)

Question 20

What are the two groups of instruments that can be used in a quantitative method of measuring HRQoL?

Answer 20

• Generic instruments

- Specific instruments

Question 21

Suggest some of the advantages of using generic instruments when carrying out a quantitative method of measuring HRQoL?

Answer 21

• Can be used for broad range of health problems
• Can be used if no disease-specific instrument
• Enable comparisons across treatment groups
• Can be used to detect unexpected positive/negative effects of an intervention
• Can be used to assess health of populations (don’t need to have disease)
• Questions on social, emotional and physical functioning, pain and self-care

Question 22

Suggest some of the disadvantages of using generic instruments when carrying out a quantitative method of measuring HRQoL?

Answer 22

• Generic nature means inherently less detailed
• Loss of relevance (too general/many false positives)
• Can be less sensitive to changes that occur as a result of an intervention (needs a big change for
• May be less acceptable to patients

Question 23

When might SF-36 be used?

Answer 23

• Measure of general health
• Population surveys
• Patient management
• Resource allocation
• Audit tool
• Clinical tool

Question 24

Briefly describe the SF-36.

Answer 24

Contains 36 items which can also be grouped into 8 dimensions (4 physical and 4 mental). Scores within each dimension are added together to give a score (0-100)

N.b. each dimensional score is taken as a separate piece, NOT added together.

Question 25

What are the five components of the work of chronic illness? i.e. what do you have to do to try and feel/pretend to be ‘normal’

Answer 25

• Illness work
• Everyday life work
• Emotional work
• Biographical work
• Identity work

Question 26

Define stigma.

Answer 26

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

Question 27

What are illness narratives?

Answer 27

The story a patient tells about their illness, how they interact with the world around them and how they make sense of their condition. They may be trying to make sense of why them or why it happened at a certain time, however, this is more narrative reconstruction.

Question 28

What do we mean when we talk about how people with chronic disease often perform illness work in attempt to appear “fine”?

Answer 28

They attempt to managed there symptoms in order to deal (and often hide) the physical manifestations/limitations of their illness.

Question 29

What do we mean when we talk about how people with chronic disease often perform everyday life work in attempt to appear “fine”?

Answer 29

They attempt to rebuild their previous normal routine by making adjustments to their life to compensate for their condition. This is the idea of remaining independent and trying to make this new life, the “normal”.

Question 30

What do we mean when we talk about how people with chronic disease often perform emotional work in attempt to appear “fine”?

Answer 30

They attempt to mask and hide their emotions to spare the feelings of others. The effect is compounded if they have moved from a different social/family position due to their illness. (no longer working etc.)

Question 31

What do we mean when we talk about how people with chronic disease often perform biographical work in attempt to appear “fine”?

Answer 31

They attempt to re-invent who they are, taking into account the limitations put on them. This is very simply trying to pick up the pieces of who you were and reassemble them into the new you.

Question 32

What do we mean when we talk about how people with chronic disease often perform identity work in attempt to appear “fine”?

Answer 32

They attempt to find an identity they are comfortable with even while being limited.

Question 33

What is the difference between discreditable and discredited types of stigma.

Answer 33

• Discreditable - the ‘problem’ they have hasn’t been revealed yet, people don’t yet know enough to judge them (waiting to be revealed)
• Discredited - the ‘problem’ is obviously apparent (disability) and the person is set apart clearly

Question 34

What is enacted stigma? How is this different to felt stigma?

Answer 34

Enacted stigma is where prejudice, discrimination and disadvantage have occurred because of the stigma attached to a condition, though etc. Felt stigma is the fear of people being prejudiced, discriminatory and/or the stigma putting the patient at a disadvantage.

Question 35

What is the difference between the medical model of disability and the social model of disability?

Answer 35

The core difference between them is that the medical model focuses ONLY on the biological impact of disability and the social model focuses ONLY on the psychosocial impact of disability.

• Medical model suggests that disabled people are disadvantaged as they physically can’t do some thing
• Social model suggests that disadvantages are products of the environment and society’s failure to adjust