Michael A. Echteld

Evaluation of QOL Instruments for Palliative Care

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

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

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

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

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

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

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)

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

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

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

Thank you

Palliative care instruments: Towards a common agenda

Project group:Gwenda AlbersLuc DeliensMichael A. EchteldMecheline van der LindenBregje Onwuteaka-PhilipsenRiekie de Vet