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

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  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

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