Characterisation of Quality of Life and Its Utility as a Descriptor of Health Outcomes for People With Profound Intellectual and Multiple Disabilities: A Scoping Review of Primary Studies.
Sarah J Ballard, Hazel M Chapman
Across 31 studies of adults with profound intellectual and multiple disabilities, no existing quality-of-life measure can show whether postural care is working, and no agreed threshold exists for what counts as 'good' or 'poor' QOL in this group.
Key findings
131 studies were included in the review, encompassing 5,716 participants: 3,098 adults with severe or profound intellectual disabilities (aged 18–85, 56% male, 45% female), 1,312 with unclear age or disability level, and 1,306 proxies (77.9% care staff, 18.1% family, 3.9% expert professionals).
2No included study evaluated quality of life in relation to postural care, and only one study mentioned deteriorating posture and body shape as a negative influence on QOL.
3No existing QOL measure achieves the balance between breadth of inclusion and specificity needed to detect change from postural care interventions, and none of the included studies set thresholds for what constitutes 'good' or 'poor' QOL in this population.
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What it does not show
Only 31 studies were included, and many of these shared authors, meaning the evidence base rests on a small pool of researchers working mainly in Europe; only 3 relevant UK studies were published since 2010. All included studies were conducted in 'developed' countries, so findings may not transfer to other health and social care systems. Every study relied on proxy reporting; the person with profound intellectual and multiple disabilities could not self-report or challenge the findings, so there is no way to verify whose perspective the scores actually reflect. Most studies used a quantitative, post-positivist framing that reduces a naturally subjective and multifaceted concept to a number, and the authors note that numbers without the person's own context are problematic. The review is limited to studies published from 2010 onward and in English, which may exclude relevant earlier or non-English work. The included studies themselves had moderate-to-good quality at best (MMAT scores 5–9), with common weaknesses including insufficient justification for methods and inadequate explanation of confounding factors.
Declared interests
The authors declare no conflicts of interest and report no funding.
The easy way to misread this
Do not read the finding that most studies rated QOL as 'poor' as evidence that interventions for this group are ineffective — the review's central point is that no existing measure can detect whether an intervention (including postural care) is actually making a difference, so the low scores may reflect the limits of the tools rather than the true experience of the person.
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