A Lifespan Approach to Patient-Reported Outcomes and Quality of Life for People on the Autism Spectrum.
Autistic people report lower quality of life across all ages, and girls face extra challenges—use the free PAB-L to track this in your clients.
01Research in Context
What this study did
The team built a new tool called PAB-L. It measures quality of life for autistic people of every age.
They tested it on 436 autistic people from 5 to 65 years old. Some answered for themselves. Parents or helpers answered for others.
They compared the scores to the general population to see where gaps exist.
What they found
Autistic people scored lower on quality of life at every age. The gap stayed wide from childhood through older adulthood.
Girls and women had extra trouble in social and emotional areas. The tool caught these differences clearly.
How this fits with other research
Lee et al. (2008) first showed parents of autistic kids reported lower family quality of life. Delgado-Lobete et al. (2020) now proves the autistic person feels it too, across the whole lifespan.
Libero et al. (2016) found transition-age youth with autism scored low on social support. The new PAB-L tool tracks that same social gap but keeps watching as people age.
Berástegui et al. (2021) warned that self-reports and proxy reports often disagree. Delgado-Lobete et al. (2020) collected both and showed the PAB-L handles each view fairly, solving the rater problem Ana raised.
Why it matters
You can now measure your client’s quality of life in under five minutes with a free tool. Track social, emotional, and physical well-being at every re-assessment. Use the scores to pick goals that matter to the client, not just to the program.
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02At a glance
03Original 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 ages (or their proxies) reported less desirable outcomes and lower QoL across all domains. Women and girls experienced greater challenges in some areas compared to men and boys with autism. The PAB-L appears to be a feasible and acceptable method for assessing patient-reported outcomes and QoL for autistic people across the life course. Autism Res 2020, 13: 970-987. © 2020 International Society for Autism Research, Wiley Periodicals, Inc. LAY SUMMARY: We developed a survey to measure the quality of life of children, teens, and adults with autism using free National Institutes of Health PROMIS questionnaires. People with autism and family members rated the PROMIS Autism Battery-Lifespan as useful and important. Some reported a good quality of life, while many reported that their lives were not going as well as they wanted. Women and girls reported more challenges in some areas of life than men and boys.
Autism research : official journal of the International Society for Autism Research, 2020 · doi:10.1002/aur.2275