Review: a systematic review of quality of life measures for people with intellectual disabilities and challenging behaviours.
No validated QOL tool exists for clients with ID plus challenging behaviour—adapt or create one before using scores for big decisions.
01Research in Context
What this study did
The team hunted for quality-of-life (QOL) tools made for adults with intellectual disability (ID).
They screened every paper published up to 2012 and kept only tools with solid psych data.
Out of 24 QOL measures, six passed the math test; none worked for clients who also show aggression, self-harm, or other challenging behaviour.
What they found
No off-the-shelf QOL tool is ready for your clients with ID plus severe behaviour problems.
If you use the six “good” tools anyway, scores may be shaky and miss real-life changes.
How this fits with other research
Jones et al. (2010) built the QUALITRA-ID interview to capture client views on care. Their paper is a predecessor: it shows one way to make ID-friendly items, but it came out too early to be in the 2012 review.
Guerin et al. (2009) proved the CGQ-ID grief scale is reliable for adults with ID. Like the QOL hunt, this study stresses strong psychometrics, yet it also reveals the field’s habit of building single-issue tools instead of broad ones.
Dolezal et al. (2010) reviewed clozapine for challenging behaviour and found no clear benefit. Together with Early et al. (2012), the pair flags a double gap: we lack both effective meds and sound outcome scales for this high-risk group.
Why it matters
You can’t show payers that behaviour plans improve life quality if the yardstick is broken. Start small: pick one of the six “okay” tools, add easy-picture response options, and pilot it with two clients who hit or bite. Track if scores move when problem behaviour drops. Share the tweaked version with your team so everyone stops guessing about “quality of life.”
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02At a glance
03Original 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.
Journal of intellectual disability research : JIDR, 2012 · doi:10.1111/j.1365-2788.2011.01427.x