Chronic Illness And Patient Reported Outcomes

Question 1

What is a chronic illness?

Answer 1

Long term
Profound influence of lives of suffered
Often co-morbid

Question 2

What are the psychological aspects we must consider with chronic illness?

Answer 2

Coping styles and how we can help
Emotional responses eg. Anxiety and depression
Possible effects of distress on health outcomes

Question 3

What is the sociological approach to chronic illness?

Answer 3

Focuses on how chronic illness impacts on social interaction and role performance
Modern theory derived from studies in interactionist tradition

Question 4

What is the interactionist tradition?

Answer 4

How do people make sense of the world through their interaction with others?
Concerned with experiences and meanings of chronic illness

Question 5

What are illness narratives?

Answer 5

The story telling and accounting practices that occur in the face of illness
As the patient wants to tell you - found out the significance they place on different events

Question 6

What are the different types of work of chronic illness?

Answer 6

Illness work
Every day life work 
Emotional work 
Biographic work 
Identity work

Question 7

Describe illness work of chronic illness

Answer 7

Getting a diagnosis - may be prolonged and unpleasant, some people have to really push
Dealing with diagnosis
Managing Sx - self management

Question 8

Describe everyday life work of chronic illness

Answer 8

Cognitive processes involved in dealing with illness
Actions and processes involved in managing condition and impact
Normalisation - try to keep pre-illness identity and lifestyle
Or redesignate new life as normal life

Question 9

Describe emotional work of chronic illness

Answer 9

Protecting emotional well-being of others
Don’t let people see Sx or problems - sometimes HCPs included in this, difficult to manage
Often downplaying of pain or Sx
Dependency

Question 10

Describe biographical work of chronic illness

Answer 10

Loss of self
Former self-image cables - different plan for life
May not develop a valued new image
Fragility of life

Question 11

Describe identity work of chronic illness

Answer 11

Different conditions have different connotations - stereotypes
How people see themselves or how others see them
Stigma: ‘deviant status’
Can we present ourselves how we want to?

Question 12

What is a discreditable disease?

Answer 12

People cannot tell from just looking at you but would treat you differently if they knew you had it
Eg. HIV, mental illness
Concealing illness can be a psych issue

Question 13

What is a discredited disease?

Answer 13

Physically visible characteristics or well-known stigma which sets them apart
Eg. Physical disability

Question 14

Describe felt vs enacted stigma

Answer 14

Enacted - real experience of prejudice, discrimination and/or disadvantage
Felt - fear of enacted stigma, encompasses a feeling of shame

Question 15

Describe the medical model of disability

Answer 15

Disability is a deviation from medical norms
Disadvantages are direct consequences of impairment
Needs medical intervention

Question 16

Describe the social model of disability

Answer 16

Problems are a product of environment, failure to adjust
A form of social oppression
Political and social action needed

Question 17

What is the critique of the medical model of disability?

Answer 17

Lack of recognition of social and psych factors

Stereotyping and stigmatising language

Question 18

What is the critique of the social model of disability?

Answer 18

Body is left out

Overly drawn view of society

Question 19

What are the 3 classifications of consequences of disability according to ICIDH?

Answer 19

Impairment - abnormalities in structure or functioning of body
Disability - concerned with performance of activities
Handicap - broader social and psych consequences of living with impairment

Question 20

What does HRQoL stand for?

Answer 20

Health related quality of life

Question 21

Why should we measure health?

Answer 21

Indication of need
Target resources
Assess effectiveness
Evaluate quality 
Get better value for money 
Monitor patient progress

Question 22

Name some measures of health

Answer 22

Mortality
Morbidity
Patient-based outcomes

Question 23

What are PROMS?

Answer 23

Patient reported outcome measures

Question 24

Why should we use pt based outcomes?

Answer 24

Increase in conditions where long term aim is managing rather than curing
Biomedical tests only one part of the picture
Need to focus on pt concerns
Pay attention to iatrogenic effects of care

Question 25

Why do we use PROMS?

Answer 25

Improve clinical Mx of pts
Informed, shared decision making
Comparison of providers

Question 26

What are the 4 clinical procedures currently covered by PROMs?

Answer 26

Hip replacement
Knee replacement
Groin hernia
Varicose veins

Question 27

Why is PROMs data published?

Answer 27

Accessible to everyone
Comparison between trusts
Indicator of quality of care
Inform pt decision making

Question 28

What are the challenges with PROMs?

Answer 28

Collection of all the data 
Achieving high rate of pt participation 
Providing appropriate output to different audiences 
Avoiding misuse
Expanding to other areas

Question 29

What are the advantages of generic instruments measuring quality of life?

Answer 29

Used for a broad range of health problems
Used when there isn’t a disease specific one
Enable comparisons across groups
Can detect unexpected positive/negative effects
Assess health of population

Question 30

What are the disadvantages of generic measures of quality of life?

Answer 30

Generic, less detailed?
Loss of relevance?
May be less acceptable to pts
Completion rates low

Question 31

Give some examples of generic measures of quality of life

Answer 31

Short form 36 item questionnaire (SF-36)

The EuroQol EQ-5D

Question 32

Describe the SF-36

Answer 32

Short form 36 item questionnaire 
Most well known/used
Standard and acute version 
Reliable and valid 
Bits grouped into dimensions to explore 
Responsive to change

Question 33

What is the problem with the SF-36?

Answer 33

Gives you 8 different scores for 1 patient

Can be hard to evaluate

Question 34

Describe the EQ-5D

Answer 34

Simple profile of pt
Gets you to a single score for pt between 0-1
In 5 dimensions
Covers a wide range but not everything

Question 35

What are the 5 dimensions covered in the EQ-5D?

Answer 35

Mobility 
Self care
Usual activities
Pain/discomfort
Anxiety/depression

Question 36

What are the advantages of specific measures of quality of life?

Answer 36

Very relevant content
Sensitive to change
Acceptable to patients

Question 37

What are the disadvantages of specific measures of quality of life?

Answer 37

Cannot use with other patients
Comparison is limited
May not detect unexpected effects- because will not ask