Patient Reported Outcomes

Question 1

Why should we measure health

Answer 1

To have an indication of the need for healthcare
To target resources where they are most needed
To assess the effectiveness of health interventions
To evaluate the quality of health services
To use evaluations of effectiveness to get better value for money
To monitor patients’ progress

Question 2

How can we measure patient based outcomes?

Answer 2

Attempt to assess well-being from the patient’s point of view
Examples: health-related quality of life (HRQoL), health status, functional abilities
Patient-reported outcome measures (PROMs) are measures of health directly from patients
They work by comparing scores before and after treatment or over longer periods

Question 3

Why do we use patient based outcomes?

Answer 3

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 4

Why do we introduce PROM’s

Answer 4

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

Question 5

What is quality of life?

Answer 5

‘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 6

How can we measure HRQoL?

Answer 6

Two main choices

1. Qualitative methods
2. Quantitative methods • Specific vs generic instruments

Question 7

Describe advantages and disadvantages of qualitative methods of measuring HRQoL?

Answer 7

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

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

Question 8

Describe quantitative methods of measuring HRQoL?

Answer 8

Quantitative approach relies on use of questionnaires known as ‘instruments’ or ‘scales’

Question 9

What are the two most important properties of PROM instruments?

Answer 9

RELIABILITY- is the instrument accurate over time and internally consistent? (if the patient has no change in health, they should get the same score each time on the measure)
VALIDITY – does the instrument measure what it is intended to measure? (a measure might be accessing only pain, and neglecting social aspects of illness)

Question 10

Why is using published instruments good/bad?

Answer 10

Reliability and validity already established
Can be used to compare across different groups of patients using standardised measures
But can be used indiscriminately and inappropriately

Question 11

When measuring quality of life what are the advantages and disadvantages of generic instruments?

Answer 11

Generic instruments – advantages
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

Generic instruments – disadvantages
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 12

Describe the SF-36 including advantages and disadvantages

Answer 12

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

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 

Advantages – quick, easy to evaluate and population comparable

Disadvantages – sick/elderly people often don’t show change or progression
It lacks a single index, provides 8 scores

Question 13

Describe the EuroQol EQ-5D

Answer 13

Generic measure, provides simple descriptive profile
Generates a single index value for health status on which full health is assigned a value of 1 and death a value of 0

The EQ-5D dimensions
5 dimensions – Mobility – Self-care – Usual activities (e.g. work, study, housework, family or leisure activities) – Pain/Discomfort – Anxiety/Depression
3 levels for each dimension – No problems – Some/moderate problems – Extreme problems

Question 14

What are the three different types of specific instruments give examples

Answer 14

Disease specific instruments
Site specific instruments
Dimension Specific Instruments

Types of specific instruments
Disease specific: – Asthma Quality of Life Questionnaire, Arthritis Impact Measurement Scale (AIMS)
Site specific: – Oxford Hip Score, Shoulder Disability Questionnaire
Dimension specific: – Beck Depression Inventory, McGill Pain Questionnaire

Question 15

What are the advantages and disadvantages of specific instruments

Answer 15

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

ADVANTAGES
Very relevant content
Sensitive to change
Acceptable to patients

Question 16

What must be considered when selecting an instrument?

Answer 16

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?