Online survey completed by individuals with autism, parent proxies shows lower QOL across age groups
FRIDAY, March 27, 2020 (HealthDay News) — A new online survey appears to be a feasible and acceptable method for assessing patient- and parent-reported outcomes and quality of life for people with autism across the life span, according to a study published online March 10 in Autism Research.
Laura Graham Holmes, Ph.D., from the Children’s Hospital of Philadelphia Center for Autism Research, and colleagues created the Parent-Reported Outcomes Measurement Information System (PROMIS) Autism Battery-Lifespan using PROMIS scales relevant for autism. The battery provides a comprehensive examination of quality of life for children ages 5 to 13 years (through parent proxy), teens 14 to 17 years (parent proxy and self-report), and adults 18 to 65 years (self-report). Comparisons were made for patients with autism versus the general population, with 912 participants and parent informants included in the study.
The researchers found that compared with the general population, people with autism of all ages (or their proxies) reported less desirable outcomes and lower quality of life across all domains. Specifically, they reported lower life satisfaction, less social support, and more social isolation; were more likely to exhibit emotional distress through symptoms like anger and anxiety; and were more likely to have sleep problems. Women and girls with autism reported higher levels of anxiety and sleep problems than their male counterparts.
“We wanted to be sure this tool encompassed a variety of domains, including physical and mental health, relationships, and subjective well-being, so we could begin to understand on a more nuanced level the struggles and successes that autistic people experience throughout their lives,” Holmes said in a statement.
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