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Evaluation of QOL Instruments for Palliative Care

Evaluation of QOL Instruments for Palliative Care. Michael A. Echteld. Overview. The importance of instruments Evaluation of QoL measures for use in palliative care: a systematic review Recommendations For practice For research For policy. The importance of instruments.

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Evaluation of QOL Instruments for Palliative Care

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  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

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