DOI: 10.1111/jppi.12471 ISSN:

Ten‐year impact of a Down syndrome pediatric clinic

Francis Hickey, Kristine Wolter‐Warmerdam, Patricia Winders, Samantha Holland, Karen Kelminson, Dee Daniels
  • Public Health, Environmental and Occupational Health
  • Health (social science)


To report the 10‐year experience of a new pediatric Down syndrome (DS) center at one of the top 10 pediatric hospitals in the United States identified by U.S. News and World Report serving children and young adults with DS. This is a retrospective cohort study design of 1812 children with DS at a single, large, pediatric referral center specializing in DS. Children were identified from the comprehensive clinic database populated by the clinic's Visit and Intake Forms and electronic medical records. The average age at initial clinic visit was 5.50 years (SD ± 5.64). Most patients had a gastrointestinal diagnosis (n = 1319, 72.8%), ophthalmologic anomaly (n = 1286, 71.0%), cardiac defect (n = 1056, 58.3%), and obstructive sleep apnea (n = 975, 53.8%). The most common referrals made for American Academy of Pediatrics DS Guidelines compliance were for labs (n = 1152), audiology (n = 1145), ophthalmology (n = 966), and cardiology (n = 491). Clinic outreach to community pediatricians to ensure compliance with guidelines was statistically impactful with audiology (2017–2020 = 59.8%; 2011–2016 = 65.5%) and sleep study referrals (2017–2020 = 17.2%; 2011–2016 = 28.0%). Over its 10 years, the DS pediatric clinic produced over 9800 department and 5250 testing or procedure referrals. The highest volume procedures were in ear, nose, and throat with tonsillectomy/adenoidectomy and pressure equalizer tubes. Our data support that the pediatric DS clinic model can positively impact the overall health measures of patients and produce significant revenue generated by referral appointments, testing, and procedures.

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