Determinants of Healthcare Costs in Individuals With Down Syndrome: A Systematic Review

Individuals with Down syndrome (DS) require specialized medical follow-up and services more frequently than the general population, resulting in substantial healthcare costs for families and health systems. This systematic review aimed to synthesize evidence on the magnitude and determinants of direct healthcare and indirect costs associated with DS.

We searched Web of Science, PubMed, and Scopus for observational and experimental studies published in English between January 1, 2000, and December 31, 2022 (updated June 15, 2024), that reported healthcare costs or cost determinants for individuals with DS. Reference lists were also screened. We excluded non-English papers, qualitative studies, reviews, protocols, editorials, and gray literature.

The search identified 625 unique citations, of which 14 matched the inclusion criteria. Half were conducted in the USA. Inpatient services constituted the largest share of direct healthcare costs in 58% of studies. Indirect costs, mainly productivity losses among families, were reported in 25% of studies. Healthcare costs were highest during infancy (driven primarily by congenital heart defects and early hospitalizations), decreased throughout childhood and adolescence, and increased again in adulthood, particularly after age 40, due to age-related comorbidities such as dementia and multimorbidity. Associated morbidities, greater functional limitations, and lower socioeconomic status were consistently associated with higher costs.

Age, comorbidities, functional ability, and socioeconomic factors are key drivers of healthcare costs in DS. Long-term, comprehensive policies integrating medical, social, and educational support are needed. Priority should be given to early cardiac surgery coverage, multidisciplinary adult transition clinics, subsidized respite care, and financial assistance schemes to reduce both inpatient utilization and family productivity losses.