5: patient reported outcomes

Question 1

why 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

commonly used measures of health?

Answer 2

• Mortality
• Morbidity
• Patient-based outcomes

Question 3

pros of using mortality as a measure of health?

Answer 3

• Easily defined

Question 4

cons of using mortality as a measure of health?

Answer 4

• not always recorded accurately

* Not a very good way of assessing outcomes and quality of care

Question 5

pros of using morbidity as a measure of health?

Answer 5

• Routinely collected e.g. disease registers, hospital episode statistics

Question 6

cons of using morbidity as a measure of health?

Answer 6

• Collection not always reliable/accurate
• Tells us nothing about patients’ experiences
• Not always easy to use in evaluation

Question 7

patient based outcome as a measure of health?

Answer 7

• Attempt to assess well-being from the patient’s point of
view
• e.g. health-related quality of life (HRQoL), health status, functional abilities
• Patient-reported outcome measures (PROMs) = measures of health that come directly from patients

Question 8

how does patient based outcome as a measure of health work?

Answer 8

by comparing scores before and after treatment or over longer-periods

Question 9

why use patient based outcome?

Answer 9

• Increase in conditions where aim is managing rather than curing
• Biomedical tests just one part of picture
• Need to focus on patient’s concerns (patient-centred
care)
• Need to pay attention to iatrogenic effects of care

Question 10

pros of using patient based outcome? Can…

Answer 10

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

Question 11

why use PROMS (patient-related outcome measures)?

Answer 11

• Improve clinical management of patients
(informed, shared decision-making)
• Comparison of providers (hospitals)
– increase productivity through demand management
– improve quality through patient choice, purchasing

Results published to help patient’s decision making

Question 12

challenges of using PROMS?

Answer 12

• Minimising the time and cost of collection, analysis, and presentation of data
• Difficult to achieve high rates of patient participation
• Providing appropriate output to different audiences
• PROMs can be misused

Question 13

what is health-related quality of life (HRQoL)?

Answer 13

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 14

what are the multi-dimension factors of HRQoL?

Answer 14

physical function
symptoms
global judgements of health
psychological well-being
social wellbeing
cognitive functioning
personal constructs
satisfaction with care

Question 15

what is the physical function dimension of HRQoL?

Answer 15

Mobility, dexterity, range of movement, physical activity, activities of daily living (e.g. ability to eat, wash, dress)

Question 16

what are the symptoms dimension of HRQoL?

Answer 16

Pain, nausea, appetite, energy, vitality, fatigue, sleep, rest

Question 17

what is the psychological well-being of health dimension of HRQoL?

Answer 17

Psychological illness: anxiety, depression, coping, positive well-being and adjustment, sense of control, self-esteem

Question 18

what is the social well-being of health dimension of HRQoL?

Answer 18

Family and intimate relations, social contact, integration, social opportunities, leisure activities, sexual activity and satisfaction

Question 19

what is the cognitive functioning within health dimension of HRQoL?

Answer 19

Cognition, alertness, concentration, memory, confusion, ability to communicate

Question 20

what is the person construct within health dimension of HRQoL?

Answer 20

Satisfaction with bodily appearance, stigma, life satisfaction, spirituality

Question 21

How do we measure HRQoL?

Answer 21

Two main choices:

1. Qualitative methods
2. Quantitative methods (Specific vs generic instruments)

Question 22

Pros of qualitative measures of HRQoL?

Answer 22

• Very appropriate in some cases
• Gives you access to parts other methods don’t reach
• Good for initial look at dimensions of HRQoL – informing development of quantitative instruments

Question 23

cons of qualitative measures of HRQoL?

Answer 23

• Very resource-hungry (need expert training, time)
• Not easy to use in evaluation, esp RCTs

(good for initial look, but very resource hungry and not easy to evaluate)

Question 24

Quantitative measures of HRQoL?

Answer 24

• relies on use of questionnaires: known as ‘instruments’ or ‘scales’
• Should fulfil certain criteria

(have to be reliable and valid)

Question 25

what are two important properties of PROMs?

Answer 25

reliability | validity

Question 26

what is reliability within PROMs?

Answer 26

is the instrument accurate over time and internally CONSISTENT? (if the patient has no change in health, she should get the same score each time on the measure)

Question 27

what is validity within PROMs?

Answer 27

does the instrument actually measure what it is INTENDED to measure? (a measure might be accessing only pain, and neglecting social aspects of illness)

Question 28

what are the 2 quality of life measures?

Answer 28

generic instruments | specific instruments

Question 29

what are the criterias for generic instruments in measuring QoL?

Answer 29

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

Question 30

what are the criterias for Specific instruments in measuring QoL?

Answer 30

Evaluates a series of health dimensions specific to a | disease, site or dimension

Question 31

advantages of generic instruments in measuring QoL?

Answer 31

• 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

Question 32

disadvantages of generic instruments in measuring QoL?

Answer 32

* Generic nature means inherently less detailed * Loss of relevance – too general? * Can be less sensitive to changes that occur as a result of an intervention * May be less acceptable to patients

Question 33

examples of generic measures of QoL?

Answer 33

* The Short-Form 36-item questionnaire (SF-36) | * The EuroQol EQ-5D

Question 34

what is the SF-36? (recall period)

Answer 34

* Standard version uses 4 week recall period (can be used every 4 weeks) * Acute version uses 1 week recall period

Question 35

pros of SF-36?

Answer 35

* Adapted and tested for British populations * Reliable * Valid * Widely used in research (several thousand citations)

Question 36

what does the SF-36 contain?

Answer 36

``` • Contains 36 items which can also be grouped into 8 dimensions: – Physical functioning – Social functioning – Role functioning (physical) – Role functioning (emotional) – Bodily pain – Vitality – General health – Mental health ```

Question 37

scoring of SF-36?

Answer 37

• Responses to questions are scored • Scores for items within each dimension are added together • This score is transformed to give each respondent’s score for each dimension (0-100) • You are NOT allowed to add up the dimensions to give an overall score – can make interpretation difficult in some cases

Question 38

advantages of using SF-36? (performance)

Answer 38

* Acceptable to people * 5-10 mins for completion * Internal consistency good * Test retest high * Responsive to change * Population data available

Question 39

types of specific instruments?

Answer 39

* Disease specific * Site specific * Dimension specific

Question 40

examples of disease specific instruments?

Answer 40

Asthma Quality of Life Questionnaire | Arthritis Impact Measurement Scale (AIMS)

Question 41

examples of site specific instruments?

Answer 41

Oxford Hip Score | Shoulder Disability Questionnaire

Question 42

examples of dimension specific instruments?

Answer 42

Beck Depression Inventory | McGill Pain Questionnaire

Question 43

advantages of specific instruments in measuring HRQoL?

Answer 43

* Very RELEVANT content * SENSITIVE to change * ACCEPTABLE to patients

Question 44

disadvantages of specific instruments in measuring HRQoL?

Answer 44

* Can’t use them with people who don’t have the disease * Comparison is limited * May not detect unexpected effects

Question 45

how do you select the appropriate HRQoL in a range of circumstances?

Answer 45

* Is there PUBLISHED work showing established reliability and validity? * Have there been OTHER published studies that have used this instrument successfully? * Is it SUITABLE for your area of interest? * Does it adequately REFLECT patients’ concerns in this area? * Is the instrument acceptable to patients? * Is it SENSITIVE to change? * Is it EASY to administer and analyse?