1. Evaluation of QOL Instruments for Palliative Care
Michael A. Echteld

2. Overview The importance of instruments
Evaluation of QoL measures for use in palliative care: a systematic review
Recommendations
For practice
For research
For policy

3. The importance of instruments
Palliative care is a young discipline
Development of scientific evidence and care policy are of central importance
Development, evaluation and use of QoL instruments is essential
An exhaustive overview of QoL instruments suitable for use in palliative care is lacking

4. Evaluation of QoL measures for use in palliative care
Aims:
Indicating which QoL dimensions are relevant for palliative care
Show which instruments are available for the measurement of these dimensions
Determine their clinimetric quality
Methods:
Literature review showing relevant QoL dimensions
Systematic review showing instruments measuring QoL dimensions

5. Dimensions of QoL Review on palliative care studies on QoL framework
The content of QoL instruments
Patient responses on content of QoL
QoL framework
Physical comfort
(Physical) functioning
Cognitive functioning
Psychological well-being
Social well-being
Spiritual well-being
Perceived quality of care

6. Overview and clinimetric quality of QoL instruments: Methods
Systematic review inclusion criteria:
Development or validation of an instrument
Instrument should measure at least one domain of QoL
Evaluation of at least one measurement property in a palliative care population
Validation on English or Dutch language setting
Patient outcomes only
Clinimetric evaluation using an internationally accepted strategy

7. Overview and clinimetric quality of QoL instruments: Characteristics
2015 references found, 36 studies included, 29 instruments evaluated
Most instruments generic (not disease- specific)
# items varies (8-138)
Completion time varies (2m-3h)
Most instruments are self-report instruments

8. Overview and clinimetric quality of QoL instruments: Content
No instrument measured all framework domains
Few instruments measure cognitive functioning (1), overall QoL (2), perceived quality of care (7)
Unexpected high number of instruments measuring spiritual well-being (15)

9. Overview and clinimetric quality of QoL instruments: Clinimetrics
# evaluated measurement properties is low
E.g., responsiveness evaluated in 28% of the instruments, none positive
None of the instruments were evaluated using all measurement properties
Many measurements properties were not properly tested

10. Conclusions
The study results will help with the choice of an instrument
All instruments were used in palliative care populations
Information on content, usability and quality
Individual instruments cannot be recommended, because clinimetric testing is incomplete
The label ‘validated’ has its limitations
No instrument measures all relevant domains

11. Recommendations Limit the developments of new instruments
Co-ordination is required
Translations
Further validation of instruments
Designating a core set of instruments
Benefits of co-ordination
Better quality of clinimetric testing
Clear message to users facing the choice of instruments
Research collaboration opportunities
Better comparability of outcomes
No new instruments should be developed if instruments already exist that measure similar concepts

12. Thank you Palliative care instruments: Towards a common agenda
Project group:
Gwenda Albers
Luc Deliens
Michael A. Echteld
Mecheline van der Linden
Bregje Onwuteaka-Philipsen
Riekie de Vet