Quality-of-life measurement in randomised controlled trials of mental health interventions for autistic adults: a systematic review

Autistic people are more likely to have co-occurring mental health conditions compared to the general population, and mental health interventions have been identified as a top research priority by autistic people and the wider autism community. Autistic adults have also communicated that quality of life is the outcome that matters most to them in relation to mental health research and that they want to be involved more actively in the research process. Our systematic review aimed to determine the extent and nature of (1) quality of life measurement in randomised controlled trials of mental health interventions for autistic adults and (2) community involvement taking place within identified randomised controlled trials. We searched Medline, Embase, APA PsycInfo, Web of Science and grey literature sources. After screening over 10,000 records, 19 studies were eligible and five of those studies measured quality of life as an outcome. Of those five, three included community involvement and two did not report on community involvement. We conclude there is a need for increased use of quality of life measurement when trialling mental health interventions, including the use of measures validated for autistic adults – which would be facilitated by greater autistic involvement in the research process. Lay Abstract: Autistic people are more likely to have health problems than the general population. They, and people who care about them, have said mental health research is very important, and some autistic adults have said quality of life is the most helpful area to research when focusing on mental health. Autistic people should also be more deeply involved in making decisions in research. Our review aimed to find out if and how quality of life is being measured when mental health treatments are being tested, and how autistic people and the wider autism community are involved in these studies. We searched four databases and other sources and found over 10,000 records. But just 19 research studies were testing mental health treatments for autistic adults, and only five of those measured quality of life. When they did measure quality of life, it was measured in different ways and there was not much information given on how communities were involved. We suggest mental health research should measure quality of life more often and in ways that are more helpful for autistic people. Our analysis found that mental health research needs to include a wider variety of autistic people, and autistic people should be more involved in the various parts of research.