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

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


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.

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

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Activities of Daily Living
  • Adolescent
  • Adult
  • Aged
  • Caregivers*
  • Down Syndrome / physiopathology*
  • Down Syndrome / psychology
  • Female
  • Health Status*
  • Humans
  • Male
  • Middle Aged
  • Proxy
  • Quality of Life*
  • Reproducibility of Results
  • Self Report*
  • Surveys and Questionnaires
  • Young Adult