Health Surveillance in a Down Syndrome Specialty Clinic: Implementation of Electronic Health Record Integrations During the Coronavirus Disease 2019 Pandemic - 19/04/23
, Yamini J. Howe, MD 2, 3, Kavita Krell, BA 1, Brian G. Skotko, MD, MPP 1, 2, John Patrick T. Co, MD, MPH 2, 4
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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.
Le texte complet de cet article est disponible en PDF.Keywords : Down syndrome, health maintenance, quality improvement
Abbreviations : AAP, COVID-19, EHR, MGB, MGH DSP, QI, SPC, TSH
Plan
| All phases of this study were supported by an internal grant from the Quality and Safety Mini-grant program at the Massachusetts General Hospital for Children. The QI group had no role in the design and conduct of the study. S.S. has received research funding from LuMind Research Down Syndrome Foundation to conduct clinical trials for people with Down syndrome within the past 2 years. She serves in a nonpaid capacity on the Medical and Scientific Advisory Council of the Massachusetts Down Syndrome Congress, the Board of Directors of the Down Syndrome Medical Interest Group (DSMIG-USA), and the Executive Committee of the American Academy of Pediatrics Council on Genetics. B.S. occasionally consults on the topic of Down syndrome through the Gerson Lehrman Group. He receives remuneration from Down syndrome nonprofit organizations for speaking engagements and associated travel expenses. B.S. receives annual royalties from Woodbine House, Inc, for the publication of his book, Fasten your seatbelt: A crash course on Down syndrome for brothers and sisters. Within the past 2 years, he has received research funding from F. Hoffmann-La Roche, Inc, AC Immune, and LuMind IDSC Down Syndrome Foundation to conduct clinical trials for people with Down syndrome. B.S. is occasionally asked to serve as an expert witness for legal cases in which Down syndrome is discussed. B.S. serves in a nonpaid capacity on the Honorary Board of Directors for the Massachusetts Down Syndrome Congress and the Professional Advisory Committee for the National Center for Prenatal and Postnatal Down Syndrome Resources. B.S. has a sister with Down syndrome. Y.H. has received education-related funding (Autism Speaks Autism Care Network for teaching in autism ECHO),internal funding, and philanthropic funding for clinical support (Nancy Lurie Marks Foundation). Her daughter has Down syndrome. The other authors declare no conflicts of interest. |
Vol 255
P. 58 - avril 2023 Retour au numéro
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