Cost and economic burden associated with caring for children with Down syndrome: a systematic review.

OBJECTIVE

To summarise the direct and indirect cost incurred by the family and to evaluate the economic burden of caring for children with Down syndrome (DS).

METHODS

A systematic review was carried out following the Joanna Briggs guidelines. The English language studies published between 2000 and August 2024 were searched in seven databases, grey literature sources and references of the included studies. The studies were included if they assessed the cost of caring for DS children (< 18 years) or described the perception of the parents regarding the financial burden. This review included observational, longitudinal, mixed-methods and qualitative studies. Two reviewers independently screened the studies, extracted the data using a custom-made form and assessed the critical appraisal using JBI checklists. The mean and/or median costs were inflated to January 2025 and reported in US$, and the data were narratively synthesised. Thematic analysis was performed for the qualitative data.

RESULTS

The search retrieved 5652 records, of which 24 studies were included. A consistent higher cost was reported for DS children as compared with non-DS children, eg, cost associated with prescription drug claims was six times higher (US$2869 vs US$413, respectively). Additionally, there was a higher cost of caring for DS infants (eg, US$3453) as compared with the older (13-17 years: US$1157) DS children. Qualitative findings suggest that families incur additional medical, education and rehabilitation expenses, resulting in financial burden.

CONCLUSION

Considering the higher financial burden, the creation of an appropriate system of care and support mechanisms may alleviate the burden and reduce the cost of healthcare. Findings highlight the gap in research and need for standardised approaches to cost evaluation.

PROSPERO REGISTRATION NUMBER: CRD42021265312.