Investigators
G Albers, MSc
Background
There is a need for validated instruments for the measurement of
aspects important in palliative care. Care planning at the patient
level, evaluation of care, and the development of care policy are
all seriously hampered without the availability and use of
instruments. More specifically, an adequate set of validated
instruments adapted to the Dutch situation is lacking. This project
aims to evaluate the feasibility and clinimetric quality of
quality-of-life (QoL) instruments suitable for use in palliative
care, and to provide an overview and comparison of the content and
domains measured by the existing quality-of-life instruments
suitable for use in palliative care.
Methods
A literature search yielded information for the development of
a quality of life framework for palliative care. A second systematic
literature review was performed to identify instruments measuring
(at least one domain of) QoL. Articles were selected that present
data on patients receiving palliative care and at least one
clinimetric property. A checklist was used to compile descriptive
aspects of the instruments, and a broadly accepted rating list was
used to evaluate clinimetric aspects of the instruments.
Results
33 instruments were identified and evaluated. Most instruments
were targeted at palliative patients in general. None of the
instruments demonstrated satisfactory results for all measurement
properties. Fourteen instruments received positive ratings for
construct validity. Thirteen instruments were tested for reliability,
but only two were adequately tested and had positive results.
Responsiveness was not adequately tested for any of the
questionnaires. Nearly all studies lacked information on the
interpretation of scores. Almost all instruments contained items on
physical problems. Less than half of the instruments contained items
on the psychological, spiritual and social domain. Only one
instrument contained the domain of cognitive functioning. None of
the instruments contained all domains listed in the quality of life
framework.
Links
A website was started for the dissemination of the results in The
Netherlands:
http://www.meetinstrumentenpalliatievezorg.nl
(in Dutch).