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 (QoL) 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) QoL measurement in randomised controlled trials (RCTs) of mental health interventions for autistic adults and (2) community involvement taking place within identified RCTs. 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 QoL 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 QoL 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.