Health Surveillance in a Down Syndrome Specialty Clinic: Implementation of Electronic Health Record Integrations During the Coronavirus Disease 2019 Pandemic

Stephanie L Santoro; Yamini J Howe; Kavita Krell; Brian G Skotko; John Patrick T Co

doi:10.1016/j.jpeds.2022.10.021

Health Surveillance in a Down Syndrome Specialty Clinic: Implementation of Electronic Health Record Integrations During the Coronavirus Disease 2019 Pandemic

J Pediatr. 2023 Apr:255:58-64.e6. doi: 10.1016/j.jpeds.2022.10.021. Epub 2022 Oct 29.

Authors

Stephanie L Santoro¹, Yamini J Howe², Kavita Krell³, Brian G Skotko⁴, John Patrick T Co⁵

Affiliations

¹ Down Syndrome Program, Division of Medical Genetics and Metabolism, Department of Pediatrics, Massachusetts General Hospital, Boston, MA; Department of Pediatrics, Harvard Medical School, Boston, MA. Electronic address: ssantoro3@mgh.harvard.edu.
² Department of Pediatrics, Harvard Medical School, Boston, MA; Lurie Center for Autism, Massachusetts General Hospital, Boston, MA.
³ Down Syndrome Program, Division of Medical Genetics and Metabolism, Department of Pediatrics, Massachusetts General Hospital, Boston, MA.
⁴ Down Syndrome Program, Division of Medical Genetics and Metabolism, Department of Pediatrics, Massachusetts General Hospital, Boston, MA; Department of Pediatrics, Harvard Medical School, Boston, MA.
⁵ Department of Pediatrics, Harvard Medical School, Boston, MA; Department of Pediatrics, Massachusetts General Hospital, Boston, MA.

Abstract

Objective: To address gaps in routine recommended care for children with Down syndrome, through quality improvement during the coronavirus disease 2019 (COVID-19) pandemic.

Study design: A retrospective chart review of patients with Down syndrome was conducted. Records of visits to the Massachusetts General Hospital Down Syndrome Program were assessed for adherence to 5 components of the 2011 American Academy of Pediatrics (AAP) Clinical Report, "Health Supervision for Children with Down Syndrome." The impact of 2 major changes was analyzed using statistical process control charts: a planned intervention of integrations to the electronic health record for routine health maintenance with age-based logic based on a diagnosis of Down syndrome, created and implemented in July 2020; and a natural disruption in care due to the COVID-19 pandemic, starting in March 2020.

Results: From December 2018 to March 2022, 433 patients with Down syndrome had 940 visits. During the COVID-19 pandemic, adherence to the audiology component decreased (from 58% to 45%, P < .001); composite adherence decreased but later improved. Ophthalmology evaluation remained stable. Improvement in adherence to 3 components (thyroid-stimulating hormone, hemoglobin, sleep study ever) in July 2020 coincided with electronic health record integrations. Total adherence to the 5 AAP guideline components was greater for follow-up visits compared with new patient visits (69% and 61%, respectively; P < .01).

Conclusions: The COVID-19 pandemic influenced adherence to components of the AAP Health supervision for children with Down syndrome, but improvements in adherence coincided with implementation of our intervention and reopening after the COVID-19 pandemic.

Keywords: Down syndrome; health maintenance; quality improvement.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

COVID-19* / epidemiology
Child
Down Syndrome* / diagnosis
Down Syndrome* / epidemiology
Down Syndrome* / therapy
Electronic Health Records
Guideline Adherence
Humans
Pandemics
Retrospective Studies