Enhancing the Validity of a Quality of Life Measure for Autistic People.
Helen McConachie, David Mason, Jeremy R Parr and 3 others
PMID 29188584WHAT IT FOUND
Autistic adults reported lower quality of life than general population norms.
A WHO quality-of-life measure held up for this group, and new autism-specific questions added sensory overload, support, friendships, and service barriers.
Key findings
01The WHOQoL-BREF four-domain structure was acceptable for use with autistic adults.
02Nine autism-specific quality-of-life items were finalised, including one about sensory issues in the environment.
03For most domains, more than half of autistic adults scored more than one standard deviation below relevant norms.
STILL TO COME
How it was doneWhat they foundWhat it means for OTs
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What it does not show
Autism diagnoses were not verified by the research team. The sample was mainly cognitively able, with many participants having advanced school leaver qualifications or higher, so results may not generalise to autistic adults with very high support needs. The consultation was UK-based and did not begin with an open-ended question about what matters most for quality of life. The mental health item in the WHOQoL-BREF performed poorly, so a separate mental health measure may be needed. Short-term changes in quality-of-life scores should be interpreted with caution because the measure asks about the recent past and some facets of life vary. Some participants needed help completing measures or had a relative or carer respond, which may affect self-report. The ASQoL items accounted for a small part of the global identity item, so they do not fully capture autistic identity. It validates a measure and reports associations; it does not test whether using the measure improves care.
Declared interests
The work was supported by the National Institute for Health Research Newcastle Biomedical Research Centre and the Economic and Social Research Council Centre for Autism and Social Cognition. The paper states the funder had no role in design, data collection, analysis, interpretation, or writing.
The easy way to misread this
Do not read this as evidence that a quality-of-life intervention improves outcomes for autistic adults. The study checks a measure and reports associations, not treatment effects.