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

1
Q

What is chronic illness?

A

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

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2
Q

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

A

In order to offer appropriate care and support

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3
Q

Describe the onset of a chronic conditoon

A

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

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4
Q

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

A

 Shocking
 Threatening
 A relief

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5
Q

What is biographical disruption?

A

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

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6
Q

What is an illness narrative?

A

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

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7
Q

What is narrative reconstruction?

A

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

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8
Q

Why do people reconstruct a narrative?

A

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

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9
Q

Give five types of work in chronic illness

A
Illness work
Everyday life work
Emotional work
Biographical work
Identity work
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10
Q

What is illness work?

A

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

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11
Q

What is eveyday life work?

A

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

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12
Q

What is emotional work?

A

o Managing one’s own emotions and those of otherso

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

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13
Q

What are the two biggest impacts of emotional work?

A

o Impact on social relationships

o Impact on role

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14
Q

What is biographical work?

A

Loss and subsequent reconstruction of self

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15
Q

What is identity work?

A

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

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16
Q

What is stigma?

A

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

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17
Q

Give four types of stigma

A

Discreditable stigma
Discredited stigma
Enacted stigma
Felt stigma

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18
Q

What is discreditable stigma?

A

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

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19
Q

What is discredited stigma?

A

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

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20
Q

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

A

Epilepsy

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21
Q

What is enacted stigma?

A

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

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22
Q

What is felt stigma?

A

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

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23
Q

What are the two models of disability?

A

Medical model of disability

Social model of disability

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24
Q

What is the medical model of disability?

A

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

25
Q

What are the drawbacks of the medical model of disability?

A

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

26
Q

What is the social model of disability?

A

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

27
Q

What are the drawbacks of the social model of disability?

A

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.

28
Q

Give two different classifications of disability?

A

International classification of impairments, disability or handicaps

International Classification of Functions, Disability and Health

29
Q

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

A

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

30
Q

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

A

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

31
Q

Draw out the international classification of functions disability and health

A
Health condition
Body function and structure
Activities
Participation
Environmental factors
Personal factors
32
Q

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

A

international classification of functions disability and health

33
Q

Give six reasons we measure health

A

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

34
Q

Give two ways of assessing patient based outcomes

A

 Health-Related Quality of Life (HRQoL)

 Patient-Reported Outcome Measures (PROM)

35
Q

Give six ways patient based outcomes can be used

A

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

36
Q

How does the NHS outcomes framework source information about outcomes?

A

Using PROMS (patient reported outcome measures)

37
Q

What is health related quality of life?

A

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.

38
Q

What are the three key points of HRQoL

A

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

39
Q

Give 8 categories assesed in HRQoL

A

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

40
Q

Give two ways in which HRWoL can be measured

A

via Qualitative or Quantitative methods.

41
Q

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

A

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

42
Q

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

A

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

43
Q

Give two necessary facets of quantiative methods to measure HRQoL

A

Reliability of Instruments

Validity of Instruments

44
Q

What is reliability of instruments?

A

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

45
Q

What is validity of instruments?

A

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

46
Q

Give two types of instruments for measure HRQoL

A

Generic

Specific

47
Q

Give three positives of generic instruments to measure HRQoL

A

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

48
Q

What are two types of generic instruments to measure HRQoL

A

Short-form 36-item questionnaire

EuroQoL EQ-5D

49
Q

Outline an SF-36

A

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

50
Q

Give three positives of SF-36

A

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

51
Q

Outline EQ-5D

A
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
52
Q

Give four positives of EQ-5D

A

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.

53
Q

Give three types of specific survey

A

Disease specific
Site specific
Dimension specific

54
Q

Give two types of disease specific

A

 Asthma Quality of Life Questionnaire

 Arthritis Impact Measurement Scale (AIMS)

55
Q

Give two types of site specific

A

 Oxford Hip Score

 Shoulder Disability Questionnaire

56
Q

Give two types of dimension specific

A

 Beck Depression Inventory

 McGill Pain Questionnaire

57
Q

Givehree advantages of specific instruments t

A

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

58
Q

Give three disadvantages o specific instruments

A

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

59
Q

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

A

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?