Measuring subjective quality of life in autistic adults with the PROMIS global-10: Psychometric study and development of an autism-specific scoring method.

Researchers created a better way to measure quality of life in autistic adults using a questionnaire called PROMIS Global-10. They developed special scoring just for autistic people that works well and connects properly with things like physical health and emotional wellbeing. The study found that autistic women and LGBTQ+ autistic adults reported lower quality of life. This new tool is free to use and has an online calculator to help professionals.

This psychometric study validated the PROMIS Global-10 quality of life measure in autistic adults and developed an autism-specific scoring method. The research addressed a critical gap in autism research by establishing a reliable way to measure quality of life - an outcome prioritized by both researchers and autistic advocates. The newly developed scoring system demonstrated strong psychometric properties with minimal measurement error and expected correlations with related constructs like physical health and emotional distress. Exploratory findings revealed lower quality of life scores among autistic women and LGBTQ+ individuals.

The validated measure is freely available with an online calculator for research and clinical use.

Provides clinicians and researchers with a validated, freely available tool to measure quality of life in autistic adults. The autism-specific scoring improves measurement accuracy. Findings highlight need for targeted support for autistic women and LGBTQ+ individuals. Online calculator facilitates practical implementation in clinical settings.

Sample size not reported. Study limited to online recruitment which may affect generalizability. Requires further validation in autistic individuals with intellectual disabilities. Exploratory nature of demographic findings requires replication in independent samples.

Quality of Life an outcome that both researchers and autistic advocates agree is extremely important to consider when implementing services, interventions, and supports for autistic people. However, there has been little research on the topic of how quality of life can best be measured in autistic people or whether existing quality of life questionnaires are appropriate for use in the autistic population. This study aimed to validate an established quality of life measure, the Patient-Reported Outcomes Measurement Information System Global-10, in a large sample of autistic adults recruited online. We created a new way to score the Patient-Reported Outcomes Measurement Information System Global-10 scale and generate a "General quality of life" score specific to autistic adults.

This new score performed very well in this sample, showing very little measurement error and relating in expected ways to similar constructs, such as physical health and emotional distress. Exploratory analyses found that lower quality of life was associated with female sex and self-identification as a sexual or gender minority (i.e. LGBTQ + identity). These findings suggest that the new Patient-Reported Outcomes Measurement Information System Global-10 quality of life score is a reliable and valid measure of quality of life in autistic adults, although additional studies are necessary to further explore its measurement properties in other subsets of the autistic population, such as individuals with intellectual disabilities.

This measure is freely available for use as an outcome in both research and clinical practice, and an online score calculator is available to support the use of this measure in real-world applications.