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HaDSoc > 5: Chronic illness and patient related outcomes > Flashcards

5: Chronic illness and patient related outcomes Flashcards

1
Q

What is a chronic illness?

A
  • Long term
  • Medical interveniton is palliative
  • Will increased with ageing populations
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2
Q

Describe the onset of chronic illness

A

Symptoms can be striking, slow onset often, other explanations for symptoms often available

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3
Q

Describe the diagnosis of chronic disease

A

Prolonged period of uncertainty
Ambivalent status of some diagnoses e.g. IBS
Unpleasant

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4
Q

What is biographical disruption?

A

Chronic illness is a major disruptive experience

Threatens taken for granted world - biographical shift form perceived normal trajectory to abnormal

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5
Q

What is illness narrative?

A

Story telling and accounting in the face of illness

Making sense of the illness

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6
Q

What is narrative reconstruction?

A

Process by which the shattered self is reconstructed in ways that explain the appearance of illness. Realign past and present self with society.
Desire to create coherence in the aftermath of biographical disruption

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7
Q

What are the 5 types of work in chronic illness?

A
  • Illness
  • Everyday life
  • Emotional
  • Biographical
  • Identity
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8
Q

Describe illness work

A

Symptom management through treatment and lifestyle modification - day to day.
Has to be done before coping with social relationships

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9
Q

Describe everyday life work

A

Coping and strategic management through cognitive processes
Managing daily living and everyday tasks
Try to keep pre-illness lifestyle intact
Redesignate new life as normal

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10
Q

Describe emotional work

A

Protect emotional wellbeing of self and others
Downplay pain or symptoms
Maintaining normal activities becomes conscious to prevent worry
May be put on for HCPs
Impact on social relationships - social withdrawal

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11
Q

Describe biographical work

A

Reconstruction of biography
Former self image is not replaced by an equally valued new one
Struggle to maintain valued lives and maintain positive definition of self

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12
Q

Describe identity work

A

Maintain an acceptable identity - presenting ourselves in socially valued ways
Illness can become the defining aspect - connotations of some illnesses
Loss of self –> scrutinise others for discreditation, faster dependence on others, increased need for intimate contact, inability to do –> loss of social life

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13
Q

Describe self management in LTCs

A

Now encouraged for many LTCs
Difficult to achieve - poor adherence, reduced QoL and poor psych wellbeing
Online/person/phone

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14
Q

What are some types of LTC self management?

A
  • Interventions such as DESMOND
  • Expert patient programmes - peer led courses
  • Telehealth
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15
Q

Define stigma

A

A negatively defined condition, attribute, trait or behaviour, conferring deviant status

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16
Q

What are the 4 types of stigma?

A
  • Discreditable and discredited

- Enacted and felt

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17
Q

What is discreditable stigma?

A

The stigma is yet to be revealed
Worried they will be treated differently if found out
e.g. HIV positive, mental illness

18
Q

What is discredited stigma?

A

Physically visible characteristic or well known stigma sets the patient apart
Patient is discredited - affect their behaviour and that of others

19
Q

What is enacted stigma?

A

The real experience of prejudice and discrimination

20
Q

What is felt stigma?

A

Fear of enacted stigma
Feeling of shame
Discrimination has not actually occurred
Selective concealment - may affect management

21
Q

Describe the medical model of disability

A

Change from medical norms. Disadvantages are as a direct consequence of impairment
Medical interventions needed to cure or manage

22
Q

What are some critiques of the medical model of disability?

A

Lack of recognition of psychological and social factors

Stereotyping and stigmatising language

23
Q

Describe the social model of disability

A

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

24
Q

What are some critiques of the social model of disability?

A

Fails to account for biological factors

Overestimates the extent to which society can solve impairments

25
Q

What is the International Classification of Impairment, Disability and Handicaps? (ICIDH)

A

Classifies consequences of disease, 3 concepts
Disease –> impairment –> disability –> handicap
Impairment: abnormalities in structure of functioning body
Disability: performance of activities
Handicap: broader social and psychological consequences of living with impairment and disability
No longer used - handicap language offensive
Medical model

26
Q

What is the International Classification of Functions, disability and health? (ICF)

A

WHO’s framework for describing and measuring health and disability
Individual and population level
Integrate medical and social models
Body structures and functions, activities undertaken by individuals, participation in life situations
All components affected by environment and personal factors

27
Q

What are commonly used ways of measuring health?

A

Mortality - not a good way of assessing outcomes and quality. Usually unlikely for most procedures
Morbidity - routinely collected, often not reliable or accurate, nothing about experiences
Patient based outcomes

28
Q

Why are patient based outcomes used?

A 
Need to focus on patients concerns
Management > cure in many conditions
Consider iatrogenic effects
Compare scores before and after treatments
Assess benefits in relation to cost
Measure service quality
29
Q

What are challenges in use of patient based outcomes?

A

Minimise time and cost of collection, analysis
Achieve high rates of participation
Avoid misuse of PROMs

30
Q

Why introduce PROMs?

A

Improve clinical management
Shared decision making
Comparison of providers for CCGs
Improve quality through patient choice

31
Q

What is quality of life?

A

An individuals perception of their position in life in context of the culture and value system in which they live, in relation to their goals, expectations, standards and concerns

32
Q

What is a health related QoL?

A

Quality of life in clinical medicine represents the functional effect of an illness and its consequent therapy upon a patient
Emphasis on patient’s views, functional effects, therapy as well as illness

33
Q

List some HRQoL dimensions

A
  • Physical function
  • Symptoms
  • Global judgements of health - expectations of QoL
  • Psychological wellbeing
  • Social wellbeing
  • Cognitive functioning
  • Personal constructs
  • Satisfaction with care
34
Q

How is HR-QoL measured?

A
  • Can be qualitative but usually not - resource hungry and hard to evaluate
  • Quantitative usually - questionnaires (instruments)
  • Instruments should be reliable, valid (in published instruments this is established)
35
Q

Describe a generic instrument for measuring HRQoL

A

Can be used in any population - healthy people too.

Cover perceptions of whole health - all dimensions

36
Q

What are advantages of generic instruments?

A
  • Broad range of health problems
  • Can be used if no disease specific instrument
  • Compare treatment
  • Assess population health
37
Q

What are disadvantages of generic instruments?

A
  • Less detailed, loss of relevance
  • Less sensitive to changes as a result of intervention
  • Less acceptable to patients
38
Q

What are two examples of generic instruments?

A
  • Short form 36 - grouped into 8 dimensions. Gives a score from 0-100.
  • EuroQol EQ-5D - 1 is full health, death is 0, 5 dimensions
39
Q

What are the 3 types of specific instrument?

A

Disease specific
Site specific
Dimension specific

40
Q

What are advantages of specific instruments?

A
  • Relevant content
  • Acceptable to patients
  • Sensitive to change
41
Q

What are disadvantages of specific instruments?

A
  • Can’t be used in people without the disease
  • Limited comparison
  • May not detect unexpected effects
42
Q

What are some ways of selecting the appropriate HR-QoL?

A
  • Is there published work showing reliability and validity (and successful use)?
  • Suitable for area of interest?
  • Adequately reflects patients concerns? (specific vs general)
  • Acceptable to patients?
  • Sensitive to change?
  • Easy to administer and analyse?

HaDSoc (10 decks)

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