Developing a Gold Standard for Tracking Functional Outcomes in Adults with DD (short name – AFS Study)

Research Study

The purpose of this research study is to develop a new survey tool to measure functional outcomes in adults with intellectual and developmental disabilities (IDD), such as Autism Spectrum Disorder and Asperger syndrome, in an effort to better inform future policies to support the successful transition to adulthood for this population. One of the major methodological obstacles to more informed policies and programs is the absence of suitable measures of functional outcomes for adults. Currently available options include (a) measures designed for children that largely fail to capture concepts pertinent in adulthood or (b) the use of broad, often dichotomous outcomes (e.g., employed or not) that are insufficiently sensitive for monitoring progress. The objective of this project is to develop efficient and validated proxy and self-report measures of functional outcome for adults with IDD in the domains of employment, independent living, and relationships, called the Adult Functioning Scale (AFS).

This exclusively online study is enrolling both individuals age 18+ with IDDs and caregivers of individuals age 18+ with DDs who are US residents. Each individual who completes the surveys will receive an $80 Amazon e-gift card for their efforts. There is a potential for an additional $20 compensation, as a small random subset of individuals who complete the first set of surveys will be invited to complete one additional survey four weeks later (to examine the new AFS’s change-sensitivity).


Published on: Sep 1, 2022 at 11:14

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