A Lifespan Approach to Patient-Reported Outcomes and Quality of Life for People on the Autism Spectrum.

Autism Research : Official Journal of the International Society for Autism Research
Laura Graham HolmesJudith S Miller

Abstract

Autistic self-advocates, family members, and community organizations have called for greater emphasis on enhancing quality of life (QoL) for people with autism. Doing this is critical to understand how QoL unfolds across the life course and to clarify whether gender affects QoL, health, and functioning for people with autism. The purpose of this study was to curate and test a lifespan QoL measurement tool using freely available and well-constructed National Institutes of Health Parent-Reported Outcomes Measurement Information System (PROMIS). To develop the PROMIS Autism Battery-Lifespan (PAB-L), we identified PROMIS scales relevant for autism, reviewed each item, consulted with a panel of autism experts, and elicited feedback from autistic people and family members. This battery provides a comprehensive portrait of QoL for children ages 5-13 (through parent proxy), teens 14-17 (parent proxy and self-report), and adults 18-65 (self-report) with autism compared to the general population. Participants and parent informants (N = 912) recruited through a children's hospital and nationwide U.S. autism research registry completed the PAB-L online. Results indicate that compared to general population norms, people with autism of all a...Continue Reading

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Citations

Jan 3, 2021·Journal of Autism and Developmental Disorders·Michelle R Kandalaft, Kilee M DeBrabander
Jan 10, 2021·Journal of Autism and Developmental Disorders·Maarten van 't HofWietske A Ester
Apr 21, 2021·Autism Research : Official Journal of the International Society for Autism Research·Zachary J Williams, Katherine O Gotham
Oct 17, 2021·Quality of Life Research : an International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation·B Blair BradenJohn E Ware

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