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

Overview

Journal J Pediatr

Specialty Pediatrics

Date 2023 Apr 21

PMID 37081778

Authors

Stephanie L Santoro

Yamini J Howe

Kavita Krell

Brian G Skotko

John Patrick T Co

Affiliations

Soon will be listed here.

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.

Citing Articles

Views on the impact of the COVID-19 pandemic on health in people with Down syndrome from diverse backgrounds.

Santoro S, Baker S, Blake J, Cabrera M, Caughman K, Chung J Am J Med Genet A. 2023; 191(8):2045-2056.

PMID: 37264986 PMC: 10524618. DOI: 10.1002/ajmg.a.63233.

Quality Improvement Initiatives to Inform Optimal Care for Down Syndrome.

Bull M J Pediatr. 2022; 255:15-16.

PMID: 36563898 PMC: 9764828. DOI: 10.1016/j.jpeds.2022.12.018.

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