Development of a tool to describe overall health, social independence and activity limitation of adolescents and young adults with disability.
A fresh five-factor youth QoL survey predicts medical needs in teens and young adults with fragile X, spina bifida or muscular dystrophy.
01Research in Context
What this study did
The team built a new five-part quality-of-life tool for teens and young adults with fragile X, spina bifida or muscular dystrophy.
They asked youth about emotional health, independence, activity limits, social life and physical health.
Scores on the new tool lined up with how often the youth used doctors, showing the tool tracks real-life needs.
What they found
The five areas hang together well, so the tool gives one clear picture.
Higher scores predicted fewer hospital visits, meaning the survey spots who needs more help.
How this fits with other research
Madden et al. (2003) built a family QoL scale years earlier. Their work asked parents the questions; B et al. now let youth answer for themselves.
Lecavalier et al. (2006) and Cashon et al. (2013) made adult tools rated by staff. The new teen tool is self-report, giving the young voice center stage.
Perry et al. (2024) tested brief pediatric checklists like PedsQL. Those work for kids; the new tool fills the gap for older youth with genetic or neuromotor conditions.
Why it matters
You can add this short scale to intake packets for teens with FXS, SB or MD. Low scores flag areas to target in treatment plans and justify authorizing more therapy hours or respite.
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Hand the five-factor QoL form to your next teen client; circle any item scored low and weave those priorities into the treatment plan.
02At a glance
03Original abstract
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.
Research in developmental disabilities, 2015 · doi:10.1016/j.ridd.2014.12.009