5: patient reported outcomes Flashcards
why measure health?
- 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
commonly used measures of health?
- Mortality
- Morbidity
- Patient-based outcomes
pros of using mortality as a measure of health?
• Easily defined
cons of using mortality as a measure of health?
- not always recorded accurately
* Not a very good way of assessing outcomes and quality of care
pros of using morbidity as a measure of health?
• Routinely collected e.g. disease registers, hospital episode statistics
cons of using morbidity as a measure of health?
- Collection not always reliable/accurate
- Tells us nothing about patients’ experiences
- Not always easy to use in evaluation
patient based outcome as a measure of health?
• 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
how does patient based outcome as a measure of health work?
by comparing scores before and after treatment or over longer-periods
why use patient based outcome?
• 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
pros of using patient based outcome? Can…
- 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
why use PROMS (patient-related outcome measures)?
• 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
challenges of using PROMS?
- 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
what is health-related quality of life (HRQoL)?
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
what are the multi-dimension factors of HRQoL?
physical function symptoms global judgements of health psychological well-being social wellbeing cognitive functioning personal constructs satisfaction with care
what is the physical function dimension of HRQoL?
Mobility, dexterity, range of movement, physical activity, activities of daily living (e.g. ability to eat, wash, dress)
what are the symptoms dimension of HRQoL?
Pain, nausea, appetite, energy, vitality, fatigue, sleep, rest
what is the psychological well-being of health dimension of HRQoL?
Psychological illness: anxiety, depression, coping, positive well-being and adjustment, sense of control, self-esteem
what is the social well-being of health dimension of HRQoL?
Family and intimate relations, social contact, integration, social opportunities, leisure activities, sexual activity and satisfaction
what is the cognitive functioning within health dimension of HRQoL?
Cognition, alertness, concentration, memory, confusion, ability to communicate
what is the person construct within health dimension of HRQoL?
Satisfaction with bodily appearance, stigma, life satisfaction, spirituality
How do we measure HRQoL?
Two main choices:
- Qualitative methods
- Quantitative methods (Specific vs generic instruments)
Pros of qualitative measures of HRQoL?
- 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
cons of qualitative measures of HRQoL?
- 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)
Quantitative measures of HRQoL?
- relies on use of questionnaires: known as ‘instruments’ or ‘scales’
- Should fulfil certain criteria
(have to be reliable and valid)
what are two important properties of PROMs?
reliability
validity
what is reliability within PROMs?
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)
what is validity within PROMs?
does the instrument actually measure what it is INTENDED to measure? (a measure might be accessing only pain, and neglecting social aspects of illness)
what are the 2 quality of life measures?
generic instruments
specific instruments
what are the criterias for generic instruments in measuring QoL?
• 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
what are the criterias for Specific instruments in measuring QoL?
Evaluates a series of health dimensions specific to a
disease, site or dimension
advantages of generic instruments in measuring QoL?
• 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
disadvantages of generic instruments in measuring QoL?
- 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
examples of generic measures of QoL?
- The Short-Form 36-item questionnaire (SF-36)
* The EuroQol EQ-5D
what is the SF-36? (recall period)
- Standard version uses 4 week recall period (can be used every 4 weeks)
- Acute version uses 1 week recall period
pros of SF-36?
- Adapted and tested for British populations
- Reliable
- Valid
- Widely used in research (several thousand citations)
what does the SF-36 contain?
• 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
scoring of SF-36?
• 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
advantages of using SF-36? (performance)
- Acceptable to people
- 5-10 mins for completion
- Internal consistency good
- Test retest high
- Responsive to change
- Population data available
types of specific instruments?
- Disease specific
- Site specific
- Dimension specific
examples of disease specific instruments?
Asthma Quality of Life Questionnaire
Arthritis Impact Measurement Scale (AIMS)
examples of site specific instruments?
Oxford Hip Score
Shoulder Disability Questionnaire
examples of dimension specific instruments?
Beck Depression Inventory
McGill Pain Questionnaire
advantages of specific instruments in measuring HRQoL?
- Very RELEVANT content
- SENSITIVE to change
- ACCEPTABLE to patients
disadvantages of specific instruments in measuring HRQoL?
- Can’t use them with people who don’t have the disease
- Comparison is limited
- May not detect unexpected effects
how do you select the appropriate HRQoL in a range of circumstances?
- 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?
