Development of a tool to describe overall health, social independence and activity limitation of adolescents and young adults with disability

• We developed a tool to measure quality of life in young people with disability.
• This tool can be utilized among diverse groups of young people with disability.
• We used factor analysis to reduce the number of questions in the tool.
• We validated the tool by examining the association of scores with health care use.

There is a need for research that focuses on the correlation between self-perceived quality of life (QoL) and the health outcomes of adolescents with disability transitioning to adulthood. To better understand the transition experience of adolescents and young adults with disability, we developed a questionnaire to assess the impact of disability on QoL. We recruited 174 participants who were 15–24 years old and diagnosed with Fragile X syndrome (FXS), spina bifida (SB) or muscular dystrophy (MD) and conducted an exploratory factor analysis to identify factors that characterize QoL. Five factors emerged: emotional health, physical health, independence, activity limitation, and community participation. To validate the tool, we linked medical claims and other administrative data records and examined the association of the factor scores with health care utilization and found the questionnaire can be utilized among diverse groups of young people with disability.