Session 4 - Chronic Illness; Health-Related Quality of Life

Question 1

What is chronic illness?

Answer 1

is a term that encompasses a wide range of conditions, which are long term and tend to have profound influence on the lives of sufferers

Question 2

Why is a detailed understanding of the impact of chronic illness and disability necessary for providers and social?

Answer 2

In order to offer appropriate care and support

Question 3

Describe the onset of a chronic conditoon

Answer 3

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

Question 4

Give three issues which may face a patient recieving a diagnosis of chronic illness

Answer 4

 Shocking
 Threatening
 A relief

Question 5

What is biographical disruption?

Answer 5

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

Question 6

What is an illness narrative?

Answer 6

a way of making sense of the illness, and they perform certain functions.

Question 7

What is narrative reconstruction?

Answer 7

Narrative reconstruction is a process by which the shattered self is reconstructed in ways that explain the appearance of illness.

Question 8

Why do people reconstruct a narrative?

Answer 8

Narrative reconstruction comes from a desire to create a sense of coherence, stability and order in the aftermath of biographical disruption

Question 9

Give five types of work in chronic illness

Answer 9

Illness work
Everyday life work
Emotional work
Biographical work
Identity work

Question 10

What is illness work?

Answer 10

o Symptom management
o Central to the coping task is dealing with the physical manifestations of illness. E.g. eating, bathing, going to the toilet

Question 11

What is eveyday life work?

Answer 11

o Managing daily living
o Try to keep pre-illness lifestyle and identity intact
o Re-designate new life as ‘normal life’

Question 12

What is emotional work?

Answer 12

o Managing one’s own emotions and those of otherso

- Work that patients do to protect the emotional well-being of others

Question 13

What are the two biggest impacts of emotional work?

Answer 13

o Impact on social relationships

o Impact on role

Question 14

What is biographical work?

Answer 14

Loss and subsequent reconstruction of self

Question 15

What is identity work?

Answer 15

Work to maintain an acceptable identitiy
o Illness can affect how people see themselves, and how others see them
 Illness can become the defining aspect of identity

Question 16

What is stigma?

Answer 16

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

Question 17

Give four types of stigma

Answer 17

Discreditable stigma
Discredited stigma
Enacted stigma
Felt stigma

Question 18

What is discreditable stigma?

Answer 18

o Nothing seen, but if found out…
o 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.
 E.g. Mental illness, HIV

Question 19

What is discredited stigma?

Answer 19

o Physically visible characteristic or well-known stigma that sets patient apart
o The patient is discredited, thus affects not only the patient’s behaviour but the behaviour of others
 E.g. Physical disability, known suicide attempt

Question 20

Give a condition that can be associated with both discreditable and discredited stigma

Answer 20

Epilepsy

Question 21

What is enacted stigma?

Answer 21

o The real experience of prejudice, discrimination and disadvantage
o Discrimination has actually occurred

Question 22

What is felt stigma?

Answer 22

o Fear of enacted stigma
o Encompasses a feeling of shame
o Discrimination has not actually occurred, felt stigma is the fear of it

Question 23

What are the two models of disability?

Answer 23

Medical model of disability

Social model of disability

Question 24

What is the medical model of disability?

Answer 24

o Disability = Change from medical norms
o Disadvantages are a direct consequent of impairment and disabilities
o Medical intervention needed to cure or help

Question 25

What are the drawbacks of the medical model of disability?

Answer 25

The medical model lacks recognition of psychological and social factors, focussing purely on the biological. It also uses stereotyping and stigmatising language.

Question 26

What is the social model of disability?

Answer 26

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

Question 27

What are the drawbacks of the social model of disability?

Answer 27

The social model leaves out biological factors, with an overly drawn view of society. It also fails to recognise bodily realities and the extent to which these are solvable socially.

Question 28

Give two different classifications of disability?

Answer 28

International classification of impairments, disability or handicaps

International Classification of Functions, Disability and Health

Question 29

How does the International classification of impairments, disability or handicaps classify disease? x3

Answer 29

o Impairment
 Concerned with abnormalities in the structure of the functioning body
o Disability
 Concerned with the performance of activities
o Handicap
 Concerned with broader social and psychological consequences of living with impairment and disability

Question 30

What are the drawbacks of the International classification of impairments, disability or handicap?

Answer 30

The term ‘handicap’ has been used negatively and is now generally avoided. The model also implies problems are intrinsic or inevitable.

Question 31

Draw out the international classification of functions disability and health

Answer 31

Health condition
Body function and structure
Activities
Participation
Environmental factors
Personal factors

Question 32

What three ways does international classification of functions disability and health define disability

Answer 32

international classification of functions disability and health

Question 33

Give six reasons we measure health

Answer 33

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

Question 34

Give two ways of assessing patient based outcomes

Answer 34

 Health-Related Quality of Life (HRQoL)

 Patient-Reported Outcome Measures (PROM)

Question 35

Give six ways patient based outcomes can be used

Answer 35

o Be used clinically
o Be used to assess benefits in relation to cost
o Be used in a clinical audit
o Be used to measure health status of populations
o Be used to compare interventions in a clinical trial
o Be used as a measure of service quality

Question 36

How does the NHS outcomes framework source information about outcomes?

Answer 36

Using PROMS (patient reported outcome measures)

Question 37

What is health related quality of life?

Answer 37

Quality of life in clinical medicine represents the functional effect of an illness and its consequent therapy upon a patient, as perceived by the patient.

Question 38

What are the three key points of HRQoL

Answer 38

o Emphasis on patient’s own views
o Emphasis on functional effects
o Emphasis on therapy as well as illness

Question 39

Give 8 categories assesed in HRQoL

Answer 39

Bio (function) Psycho Social (wellbeing)
Symptoms, cognitive functioning
Personal constructs, global judgements of health, satisfaction with care

Question 40

Give two ways in which HRWoL can be measured

Answer 40

via Qualitative or Quantitative methods.

Question 41

Give positive and negatives (2) of using qualitative methods to measure HRQoL

Answer 41

o Good for initial looks at HRQoL
 Informing the development of quantitative instruments
o Very resource hungry (Training, time)
o Not easy to use in evaluation, especially RCTs

Question 42

Quantitative methods to measure HRQoL, what does it rely on?

Answer 42

Relies on the use of questionnaires known as ‘instruments’ or ‘scales’

Question 43

Give two necessary facets of quantiative methods to measure HRQoL

Answer 43

Reliability of Instruments

Validity of Instruments

Question 44

What is reliability of instruments?

Answer 44

o Instrument should be accurate over time

 If the patient has no change in health, they should get the same score each time on the measure

Question 45

What is validity of instruments?

Answer 45

o Does the instrument actually measure what it is intended to measure?
 Might only be assessing pain and neglecting social aspects

Question 46

Give two types of instruments for measure HRQoL

Answer 46

Generic

Specific

Question 47

Give three positives of generic instruments to measure HRQoL

Answer 47

o Can be used with any population (including healthy people)
o Generally cover perceptions of overall health
o Also questions on social, emotional and physical functioning, pain and self-care

Question 48

What are two types of generic instruments to measure HRQoL

Answer 48

Short-form 36-item questionnaire

EuroQoL EQ-5D

Question 49

Outline an SF-36

Answer 49

o Contains 36 items that assess HRQoL
 Grouped into 8 dimensions
o Responses to questions are scored
o Scores within each dimension are added together to give a score (0-100)
o Dimension scores are not added together to give an overall score, could make interpretation difficult in some cares

Question 50

Give three positives of SF-36

Answer 50

, only takes 5-10 minutes to complete, has good reliability and is responsive to change

Question 51

Outline EQ-5D

Answer 51

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

Question 52

Give four positives of EQ-5D

Answer 52

It is widely used, good population data is available, and it has been well validated and tested for reliability. It is particularly suitable for use in economic evaluations.

Question 53

Give three types of specific survey

Answer 53

Disease specific
Site specific
Dimension specific

Question 54

Give two types of disease specific

Answer 54

 Asthma Quality of Life Questionnaire

 Arthritis Impact Measurement Scale (AIMS)

Question 55

Give two types of site specific

Answer 55

 Oxford Hip Score

 Shoulder Disability Questionnaire

Question 56

Give two types of dimension specific

Answer 56

 Beck Depression Inventory

 McGill Pain Questionnaire

Question 57

Givehree advantages of specific instruments t

Answer 57

they have very relevant content, are sensitive to change and are acceptable to patients.

Question 58

Give three disadvantages o specific instruments

Answer 58

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

Question 59

Assess the suitability and value of HRQoL instruments in a range of areas

Answer 59

o Is there published work showing established validity and reliability?
o Is there other published work showing successful use of the instrument
o Is it suitable for your area of interest
o Does it adequately reflect patients’ concerns in this area?
o Is the instrument acceptable to patients?
o Is it sensitive to change?
o Is it easy to administer and analyse?