Caregivers' Perspectives on Medical Management and Its Helpfulness in Down Syndrome

The World Health Organization defines health as "a state of complete physical, mental, and social well-being and not merely the absence of disease or infirmity." Medical interventions are often studied for effectiveness in carefully controlled clinical trials, but the parent-perceived, real-world helpfulness of medical management steps on health is less studied. As part of a broader study to create a valid, reliable health measure in DS, we surveyed caregivers of individuals aged 0-21 with Down syndrome (DS) about activities that were helpful for managing their children's health. From February 2023 to February 2024, we received 542 complete survey responses from a national sample. We present caregiver-reported information on actions that caregivers perceived as helpful to address medical conditions in individuals with DS, medical providers seen, and correlations with general health status. Caregiver reports revealed variable health management actions and diverse perceived helpfulness across health domains. Certain actions for constipation prevention and mental health management correlated with higher overall health scores. The utilization of primary care providers and specialists highlights the importance of interprofessional care and communication. Trial Registration: ClinicalTrials.gov: NCT04631237.