Evaluation of QOL Instruments for Palliative Care

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 • 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