A systematic review of quality of life measures for people with intellectual disabilities and challenging behaviours

Townsend-White, C., Pham, A. N.T. and Vassos, M. V. (2012) A systematic review of quality of life measures for people with intellectual disabilities and challenging behaviours. Journal of Intellectual Disability Research, 56 3: 270-284. doi:10.1111/j.1365-2788.2011.01427.x


Author Townsend-White, C.
Pham, A. N.T.
Vassos, M. V.
Title A systematic review of quality of life measures for people with intellectual disabilities and challenging behaviours
Journal name Journal of Intellectual Disability Research   Check publisher's open access policy
ISSN 0964-2633
1365-2788
Publication date 2012-03-01
Year available 2011
Sub-type Critical review of research, literature review, critical commentary
DOI 10.1111/j.1365-2788.2011.01427.x
Open Access Status Not yet assessed
Volume 56
Issue 3
Start page 270
End page 284
Total pages 15
Place of publication Oxford, United Kingdom
Publisher Wiley-Blackwell Publishing
Language eng
Abstract The quality of life (QOL) construct is proposed as a method to assess service outcomes for people utilising disability services. With this in mind, the aim of this study was to conduct a systematic review of available QOL measures for people with intellectual disability (ID) to pinpoint psychometrically sound measures that can be routinely used for service evaluation.

A systematic search of the disability literature published between 1980 and 2008 was conducted in order to identify appropriate QOL tools for use within an Australian context. Twenty-four QOL instruments were identified and each instrument was then evaluated against a set of psychometric and measurement criteria.

Six of the instruments examined were deemed to be psychometrically sound on the available information. No instruments were found that specifically assess QOL for people with ID who exhibit challenging behaviour. Most of the instruments assess QOL from a subjective perspective, use a questionnaire format and measure only some (not all) of the eight theoretically accepted domains of QOL.

More instruments that measure QOL need to be developed and rigorously validated. This is especially the case for high-needs disability populations like those individuals that exhibit challenging behaviour or have severe to profound ID, as it is questionable whether existing measures can be used with these populations.
Formatted abstract
Background The quality of life (QOL) construct is proposed as a method to assess service outcomes for people utilising disability services. With this in mind, the aim of this study was to conduct a systematic review of available QOL measures for people with intellectual disability (ID) to pinpoint psychometrically sound measures that can be routinely used for service evaluation.

Method
A systematic search of the disability literature published between 1980 and 2008 was conducted in order to identify appropriate QOL tools for use within an Australian context. Twenty-four QOL instruments were identified and each instrument was then evaluated against a set of psychometric and measurement criteria.

Results Six of the instruments examined were deemed to be psychometrically sound on the available information. No instruments were found that specifically assess QOL for people with ID who exhibit challenging behaviour. Most of the instruments assess QOL from a subjective perspective, use a questionnaire format and measure only some (not all) of the eight theoretically accepted domains of QOL.

Conclusions
More instruments that measure QOL need to be developed and rigorously validated. This is especially the case for high-needs disability populations like those individuals that exhibit challenging behaviour or have severe to profound ID, as it is questionable whether existing measures can be used with these populations.
Keyword Challenging Behaviors
Intellectual disabilities
Measurement
Quality of life
Q-Index Code C1
Q-Index Status Confirmed Code
Institutional Status UQ
Additional Notes Article first published online: 17 JUN 2011

Document type: Journal Article
Sub-type: Critical review of research, literature review, critical commentary
Collections: Faculty of Humanities and Social Sciences - Publications
Official 2013 Collection
 
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Created: Wed, 21 Mar 2012, 20:04:02 EST by Dr Maria Vassos on behalf of Faculty of Social & Behavioural Sciences