The Health-Related Quality of Life of Adults with Down Syndrome

Purpose. The purpose of this study was to examine the health-related quality of life (HRQOL) and factors associated with the HRQOL of adults with Down syndrome (DS) as reported by adults with DS and their caregivers. The study was designed to compare measures of HRQOL, health problems, health risks, and health-care utilization of adults with DS based on self-report with those from caregiver-report and to explore associations between HRQOL and health problems, health risks, health-care utilization, adaptive behavior, and demographic characteristics. Background. The life expectancy of individuals with DS has lengthened from approximately 30 years around 1960 to over 50 years currently. As adults with DS are living longer, measures such as HRQOL can help health-care providers understand the impact that health has on the quality of life of adults with DS and adapt interactions and interventions appropriately based on these findings. Currently, no studies have been identified that measure the HRQOL of adults with DS with an internationally-recognized standardized instrument. Additionally, there is controversy about assessing subjective concepts, such as HRQOL through the use of a proxy-respondent, (e.g., a parent, sibling, or unrelated caregiver). Because HRQOL has not been assessed previously in adults with DS, contributing factors to HRQOL have not been explored. Methods. Applying the Life Course Perspective (LCP) as a theoretical framework, a mixed-methods design was employed in this descriptive, correlational, cross-sectional study. Established surveys, investigator-developed questionnaires, and a semi-structured interview were administered during face-to-face meetings with 60 adults with DS and their caregivers in Alabama, Florida, Mississippi, and Tennessee. Findings and Conclusions. Self-reported HRQOL of adults with DS is above average, as is caregiver-reported HRQOL of adults with DS. There were no significant associations identified between the scores of physical HRQOL of adults with DS as reported by adults with DS and by their caregivers. There were also no significant associations identified between the scores of mental HRQOL of adults with DS as reported by adults with DS and by their caregivers. Not all variables of health problems, health risks, and health-care utilization of adults with DS obtained via self-report were associated with those obtained via caregiver-report, and some significant differences were identified. Problems with teeth or gums and asthma per caregiver-report and race of adults with DS were found to predict 28.5% of the variance of self-reported physical HRQOL of adults with DS; other health problems and feeling sad or blue per self-report and number of times going to the bathroom at night and allergies per caregiver-report were found to predict 40% of the variance of self-reported mental HRQOL of adults with DS; resistance to health care and trouble walking per self-report, trouble walking and weight problems per caregiver-report, and state of residence were found to predict 54% of the variance of caregiver-reported physical HRQOL of adults with DS; and problems with appetite per caregiver and living arrangements of adults with DS were found to predict 39.1% of the variance of caregiver-reported mental HRQOL of adults with DS.