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Am J Intellect Dev Disabil. 2016 Jul;121(4):312-26. doi: 10.1352/1944-7558-121.4.312.

Measuring Health-Related Quality of Life of Adults With Down Syndrome.

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Rebecca Jermyn Graves, University of South Alabama; J. Carolyn Graff, Donna K. Hathaway, Jim Y. Wan, and Mona Newsome Wicks, University of Tennessee Health Science Center; Anna J. Esbensen, Cincinnati Children's Hospital Medical Center.


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.


Down syndrome; adults; health-related quality of life; self-report

[Indexed for MEDLINE]

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