COSMIN database

Review: a systematic review of quality of life measures for people with intellectual disabilities and challenging behaviours

Townsend-White, C., Pham, A. N., and Vassos, M. V.
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.
J Intellect Disabil Res
1365-2788 (Electronic)
Publication year:
General health perceptions / HRQoL:
Health-related quality of life
Overall quality of life:
Overall quality of life
Adults (18-65)
Children (0-18)
Seniors (65+)
Mental and behavioural disorders and related symptoms
Symptoms, signs and abnormal clinical and laboratory findings, not elsewhere classified
PRO / non-PRO:
Non-patient Reported Outcome
Patient Reported Outcome
Type of measurement instrument:
1 - Questionnaires
2 - Interviews
6 - Clinical rating scales
Com-QOL-ID - Comprehensive Quality of Life Scale
EQLI - Evaluation of Quality of Life Instrument
MLSS - Multifaceted Lifestyle Satisfaction Scale
PWI-ID - Personal Wellbeing Index
QOLQ - Quality of Life Questionnaire
QUOLIS - Quality of Life Interview Schedule