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For people with Down syndrome, family members, caregivers and professionals.

Financial Impact of a Specialized Down Syndrome Clinic: Implications and Support for Institutional Support of Specialty Care Clinics

December 2022 | VanZant & Vellody - American Journal of Medical Genetics, Part A


Individuals with Down syndrome (DS) have specific health care needs and require additional screening and surveillance for commonly associated conditions. The American Academy of Pediatrics (AAP) Committee on Genetics has provided clinical guidance in "Health Supervision for Children and Adolescents with Down Syndrome." Many DS specialty centers (DSC) have been created, in part, to help ensure adherence to these guidelines. The primary purpose of this work is to determine the financial impact of a specialized DSC. A retrospective chart review was completed for all patients seen in DSC for fiscal year 2018 (June 2018-June 2019). Charts were reviewed to ascertain the financial impact of a DSC to a healthcare system by calculating total downstream charges (using CMS Chargemaster) as a surrogate marker for financial impact. Five-hundred-seventy-four patient encounters were conducted; 99 were new patient visits. Annual charges totaled $1,399,450. The 1-5-year-old age group accounted for greater than half of all charges. The greatest proportion of charges resulted from sleep studies and other diagnostic testing (55%). DS clinics are extremely helpful in ensuring that children receive guideline-based care. Taking into account downstream revenue, specialized DSCs are also financially beneficial to the institutions with whom they are affiliated.

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