Patient-Reported Outcomes Flashcards
Why do we have to measure health?
- Have an 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
- Use evaluations of effectiveness to get batter value for money
- Monitor patients progress
What are the commonly used measures of health?
- Mortality
- Morbidity
- Patient-based outcomes
What is good about using mortality as a measure of health?
Easily defined
What are the disadvantages of using mortality as a measure of health?
- Not always recorded accurately
- Not a very good way of assessing outcomes and quality of care
How is morbidity data routinely collected?
- Disease registers
- Hospital episode statistics
What is the problem with using morbidity data as a measure of health?
- Collection not always reliable/accurate
- Tells us nothing about the patients’ experiences
- Not always easy to use in evaluation
What do patient-based outcomes attempt to do?
Assess well-being from the patient’s point of view
Give three examples of patient-based outcomes
- Health related quality of life
- Health status
- Functional abilities
What are patient-reported outcome measures (PROMs)?
Measures of health that come directly from patients
How do PROMs work?
By comparing scores before and after treatment, or over long periods
Why do we use PROMs?
- Increase in conditions where aim is managing, rather than curing
- Biomedical tests are just one part of the picture
- Need to focus on patient’s concerns
- Need to pay attention to iatrogenic effects of care
Where can PROMs be used?
- Clinically
- To assess benefits in relation to cost
- In a clinical audit
- To measure health status of populations
- To compare interventions in a clinical trial
- As a measure of service quality
How do PROMs improve clinical management of patients?
Through informed, shared decision making
Where are PROMs the principal motivation?
In Sweden and USA
What does PROMs allow for?
Comparison of providers (hospitals)
What is the advantage of using PROMs to compare providers?
- Increased productivity through demand management
- Improve quality through patient choice, purchasing, P4P etc
What is domain 2 of the NHS Outcomes Framework 2016/17?
Enhancing quality of life for people with long-term conditions, with HRQoL for people with long term conditions being the overarching indicator
What is domain 3 of the NHS Outcomes Framework 2016/17?
Helping people recover from episodes of ill health, or following injury, with the improvement area being total health gain as assessed by patients for elective procedures (measured using a PROM)
What does NHS England’s PROMs programme currently cover?
Four clinical procedures;
- Hip replacements
- Knee replacements
- Groin hernia
- Varicose vein
What happens in NHS Englands PROM programme?
PROMs are collected by all providers of NHS-funded care since April 2009, and made publicly available
Who publishes data about PROMs?
Health and Social Care Information Centre
What can be done with the data about PROMs in NHS Englands programme?
Data can be broken down by provider, so comparisons can be made between trusts
Why is data about PROMs of interest to commissioners?
It indicates quality of care provided
Why is data about PROMs of interest to patients?
To inform their decision making
What are the challenges of PROMs?
- Minimising the time and cost of collection, analysis, and presentation of data
- Achieving high rates of patient participation
- Provide appropriate output to different audiences
- Avoiding misuse of PROMs
What is the best current definition of health related quality of life?
‘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 does HRQoL emcompass?
- Physical function
- Symptoms
- Global judgement of health
- Psychological well being
- Social well being
- Cognitive functioning
- Personal constructs
- Satisfaction with care
What is considered in physical function?
- Mobility
- Dexterity
- Range of movement
- Physical activity
- Activities of daily living
- Ability to eat, wash, dress
What symptoms are considered in HRQoL?
- Pain
- Nausea
- Appetite
- Energy
- Vitality
- Fatigue
- Sleep
- Rest
What is considered in psychological well-being?
- Psychological illness
- Anxiety
- Depression
- Coping
- Positive well-being and adjustment
- Sense of control
- Self-esteem
What is considered in social well-being?
- Family and intimate relations
- Sexual contact
- Integration
- Social oppotunities
- Leisure activities
- Sexual activity and satisfation
What is considered in cognitive functioning?
- Cognition
- Alertness
- Concentration
- Memory
- Confusion
- Ability to concentrate
What is considered in personal constructs?
- Satisfaction with body appearance
- Stigma
- Life satisfaction
- Spirituality
What are the two main choices when measuring HRQoL?
- Qualitative methods
- Quantiative methods
What is the advantage of measuring HRQoL using qualitative methods?
- Very appropriate in some cases
- Gives you access to parts other methods don’t reach
- Good for initial look at dimensions of HRQoL
What is the advantage of using qualitative methods at initially looking at the dimensions of HRQoL?
Informs development of quantitative methods
What are the disadvantages of using qualitative methods when measuring HRQoL?
- Very resource hungry
- Not easy to use in evaluation
Why are qualitative methods of looking at HRQoL very resource-hungry?
Need expert training and time
What do quantitative methods of looking at HRQoL rely on?
The use of questionnaires known as ‘instruments’ or ‘scales’
Who can generic instruments be used with?
Any population, including healthy people
What do generic instruments cover?
- Perceptions of overal health
- Social, emotional, and physical functioning
- Pain
- Self-care
What are the advantages of generic instruments?
- Can be used for a 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
What are the disadvantages of generic instruments?
- Generic nature means inherently less detailed
- Loss of relevance
- Can be less sensitive to changes that occur as a result of an intervention
- May be less acceptable to patients
Give 2 examples of generic instruments
- The Short-Form 36-item questionnaire
- The Euro-Qol ED-5D
What was the Short-Form 36-item questionnaire developed from?
Instruments used in two large-scale studies conducted in the USA
What have short-form questionnaires been derived from?
The longer (108 item) questionnaires of patient-assessed outcome
What period of recall does the standard version of the short-form 36-item questionnaire use?
4 weeks
What period of recall does the acute version of the short-form 36-item questionnaire use?
1 week
What is the short-form 36 item questionnaire adapted and tested for?
British populations
Is the short-form 36-item questionnaire reliable and valid?
Yes
What does the short-term 36-item questionnaire contain?
36 items, which can be grouped into 8 dimensions;
- Physical functioning
- Social functioning
- Role functioning (physical)
- Role functioning (emotional)
- Bodily pain
- Vitality
- General health
Mental health
What happens to the responses to the questions in the short-form 36-item questionnaire?
Responses to questions are scored, and scored for items within each dimension are added together. This score is transformed to give each respondant’s score for each dimension (0-100). You are not allowed to add up the dimensions to give an overall score, which can make interpretation difficult in some cases
What are the advantages of the short-form 36-item questionnaire?
- Acceptable to people
- 5-10 mins for completion
- Internal consistency good
- Test retest high
- Responsive to change
- Population data available
What does the Euro-Qol EQ-5D provide?
Simple descriptive profile
What does Euro-Qol EQ-5D generate?
A single index value for health status on which full health is assigned a value of 1, and death a value of 0
What are the dimensions of the Euro-Qol EQ-5D?
- Mobility
- Self care
- Usual activities
- Pain/discomfort
- Leisure activities
What usual activites are considered in the Euro-Qol EQ-5D?
- Work
- Study
- Housework
- Family
- Leisure activities
What are the levels for each dimension in the Euro-Qol EQ-5D?
- No problems
- Some/moderate problems
- Extreme problems
What was the Euro-Qol EQ-5D originally designed for?
To complement other measures such as SF-36, but increasingly used as a stand-alone measure
What are the advantages of the EuroQol EQ-5D?
- Widely used
- Good population data available
- Well validated and tested for reliability
- Particularly suitable for use in economic evaluations
What do specific instruments do?
Evaluates a series of health dimensions specific to a disease, site, or dimension
What are the advantages of specific instruments?
- Very relevant content
- Sensitive to change
- Acceptable to patients
What are the disadvantages of specific instruments?
- Can’t use them with people who don’t have the disease
- Comparison is limited
- May not detect unexpected effects
What should be considered when selecting an instrument?
- Is there published work showing established reliability and validity?
- Have there been other published studies that have used this instrument successfully?
- It is 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?
What are the important qualities of PROMs?
- Reliability
- Validity
What is meant by relability?
Is the instrument accurate over time and internally consistent
What is meany by validity?
Does the instrument actually measure what it is intended to measure
What is the advantage of published instrument?
They have their reliability and validity established
What can published instruments be used for?
To compare across different groups of patients using standardised measures
What is the risk with published instruments?
Can be used indiscriminately and inappropriately
