Researchers Develop Tool to Measure Quality of Life in People with Autism
A set of simple questionnaires can help clinicians and families better evaluate the quality of life for people diagnosed with autism spectrum disorder (ASD), according to a new study led by researchers at Children’s Hospital of Philadelphia (CHOP).
The new measurement tool is designed for people of all ages on the spectrum, and early results reveal where clinicians can learn more about how to support the needs of ASD individuals by directly asking them these critical questions.
The findings are published online this month by the journal Autism Research.
Clinical researchers tend to focus on measuring diagnostic criteria or behavioral issues, but autistic self-advocates, family members, and community organizations have long called for a greater emphasis on measuring specific and practical areas that, if properly addressed, could help people on the autism spectrum achieve a better quality of life.
Several methods on how to accomplish this have been proposed, but they have not necessarily addressed areas covering a person’s entire lifespan or had sufficient data on women and girls.
“Individual studies have examined specific quality of life measurements for people with autism, but we believed there was an opportunity to create an approach that could measure quality of life across multiple areas, in a way that can grow throughout their lifetime as needs change,” said Laura Graham Holmes, PhD, a postdoctoral researcher at the A.J. Drexel Autism Institute at Drexel University who led the research while she was a postdoctoral fellow at the CHOP Center for Autism Research.
“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.”
The research team developed and tested an autism-specific lifespan quality of life measurement tool, using the National Institutes of Health Parent-Reported Outcomes Measurement Information System (PROMIS®) as its foundation. The new tool is named the PROMIS Autism Battery – Lifespan (PAB-L).
After reviewing each area and receiving feedback from autism experts, autistic people and their families, the tool was administered for autistic children ages 5-13 (reported through parent proxy), teens ages 14-17 (parent proxy and/or self-reported), and adults ages 18-65 (self-reported), and then the findings were compared with the general population. A total of 912 participants completed the tool’s surveys online.
The study measured feasibility, and participants reported that the survey was easy to understand, covered important topics, and may even change the way an individual or parent manages their autism support programs or clinical care based on the results.
While some individuals reported strengths, on average, autistic people of all ages reported greater challenges and lower quality of life compared with their peers without autism.
In particular, 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 struggle with sleep issues. Women and teen girls on the spectrum reported higher levels of anxiety and sleep problems than their male counterparts. As this is the first study to use this tool, more studies are needed. However, these measurements give researchers a good starting point.
“This study demonstrated that assessing quality of life among patients of different ages and genders is possible, and that it’s meaningful,” said Judith S. Miller, PhD, a psychologist in the Department of Child and Adolescent Psychiatry and Behavioral Sciences, a senior scientist and training director in the Center for Autism Research at CHOP and senior author of the study.
“We believe that these findings provide an important foundation to answer some very important questions about how to support the quality of life for people with autism, including those who have been historically underrepresented in clinical research.”
Pedersen, T. (2020). Researchers Develop Tool to Measure Quality of Life in People with Autism. Psych Central. Retrieved on August 7, 2020, from https://psychcentral.com/news/2020/03/27/researchers-develop-tool-to-measure-quality-of-life-in-people-with-autism/155199.html