The Prevalence of Co‐Occurring Conditions and an Exploration of Social Factors Influencing Health in Down Syndrome

Measuring health, a state of complete physical, mental, and social well-being and not merely the absence of disease or infirmity, in Down syndrome (DS) was recently achieved through creation of a new health measure. However, additional information on health-related medical topics and how health measurement varies in demographic groups from that cohort has not been presented. We surveyed caregivers of individuals age 0-21 with Down syndrome (DS) from a national sample about the health of their son or daughter with DS as part of a broader study to create a valid, reliable health measure in DS. In this manuscript, we present secondary analysis of survey items on health-related topics including co-occurring medical conditions, recurrent infections, and healthcare maintenance. We then conducted an analysis to compare caregiver-reported demographic traits to total health scores through regression modeling to identify predictors of health status. Survey responses from 542 caregivers of individuals with DS were received; rates of co-occurring medical conditions generally aligned with past results, rates of recurrent infections showed lower rates of persistent fungal infections in our cohort (p < 0.0001) and completion of healthcare guidelines did not correlate with health scores (p = 0.13). In regression modeling, parent sex of respondent (male) and better parent health correlated with better total health scores of individuals with DS. Health-related topics show prevalence rates aligning with past literature, lower rates of some infections, and imperfect guideline adherence. Fathers and parents who feel that they are in better health reported better health of their sons and daughters with DS. Trial Registration: ClinicalTrials.gov, NCT04631237.