Determinants of Healthcare costs in individuals with Down syndrome: A systematic review

Background : Individuals with Down Syndrome (DS) are more likely than their non-disabled counterparts to require specialized follow-up and medical services, resulting in high healthcare and other costs for families and health systems. This systematic review intended to examine the costs and the determinants of costs for individuals with DS. Methods : For this systematic review, we searched Web of Science, PubMed, and Scopus from 2000 to 2022 for observational or experimental studies reporting the costs of DS or factors influencing these costs for individuals with DS. Reference lists of identified articles were also searched for additional studies. Non-English language articles, duplicates, abstracts, qualitative research, gray literature, and non-original papers (e.g., letter to the editor, editorial, reviews, etc.), were excluded. Result : The search identified 625 unique citations, of which 14 matched the inclusion criteria. Half the studies (n=7; 50%) were conducted in the United States. Inpatient services accounted for the largest proportion of total health care costs, according to 58% of included studies. Twenty five percent of studies identified economic losses to the families of individuals with DS as a result of productivity losses (time off work or out of work in order to care for the individual with DS). Health care costs and age correlate positively or negatively among individuals with DS throughout their lifetime. Moreover, associated morbidities, functional limitations, and a lower socioeconomic status were related to higher costs. Conclusions : This systematic review identified several characteristics, including age, comorbidities, and lower socioeconomic status, contributing to the greater healthcare cost associated with DS. These results suggest establishing a long-term, all-encompassing policy for medical and social welfare programs in collaboration with stakeholders and monitoring and targeting co-morbidities and support schemes for families most affected by indirect costs/losses could compensate both direct and indirect costs of DS on families and society.