Measuring Health-Related Quality of Life of Adults With Down Syndrome.
Adults with Down syndrome can reliably self-report health-related quality of life using the SF-12v2, yielding scores similar to caregiver reports.
01Research in Context
What this study did
Graves et al. (2016) asked adults with Down syndrome to fill out the SF-12v2. This is a short survey that measures physical and mental health quality of life.
Caregivers filled out the same survey about the adults. The team then compared the two sets of answers to see if they matched.
What they found
The adults' self-ratings landed in the normal range for the general population. Their answers lined up closely with what caregivers said.
The small gap between self and proxy scores shows that adults with Down syndrome can reliably report how they feel.
How this fits with other research
Khanna et al. (2015) ran a near-identical study with autistic adults and also found the SF-12v2 works well. Together, the two papers stretch the tool across two neurodivergent groups.
Lemons et al. (2015) warned that many adults with intellectual disability give unscorable answers. Jermyn's team shows that, at least for Down syndrome, most adults can complete the SF-12v2 without that problem.
Glenn et al. (2013) tweaked the Strengths and Difficulties Questionnaire for Down syndrome but still urged clinical follow-up. The SF-12v2 now offers a simpler, ready-to-use option for health-related quality of life.
Why it matters
You can hand the SF-12v2 directly to adult clients with Down syndrome at intake or yearly reviews. It takes five minutes, needs no extra training, and gives you a valid baseline for physical and mental health goals. Stop relying only on caregiver guesses and start tracking self-reported quality of life as an outcome in your behavior plans.
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02At a glance
03Original abstract
This study examined self- and caregiver-reported health-related quality of life (HRQOL) of 60 adults with Down syndrome (DS) using the QualityMetric Short Form-12 version 2 (SF-12v2). All HRQOL scores exceeded means and fell within one standard deviation of the SF-12v2 normative sample. Similarities between eight self- and caregiver-reported HRQOL scales were found with the exception of role physical scores (impact of health problems on typical accomplishments), which were lower when obtained by caregiver-report. A positive association was found between self- and caregiver-reported physical functioning scores (impact of health problems on physical activity). The SF-12v2 had high construct validity in this study. These findings support the feasibility of measuring HRQOL of adults with DS using self-report rather than reliance on caregiver-report.
American journal on intellectual and developmental disabilities, 2016 · doi:10.1352/1944-7558-121.4.312