RESUMEN
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.
Asunto(s)
COVID-19 , Síndrome de Down , Niño , Humanos , COVID-19/epidemiología , Pandemias , Registros Electrónicos de Salud , Síndrome de Down/epidemiología , Síndrome de Down/terapia , Síndrome de Down/diagnóstico , Estudios Retrospectivos , Adhesión a DirectrizRESUMEN
OBJECTIVE: To assess whether the location of 71 Down syndrome specialty care clinics in the US make them inaccessible to a considerable portion of the American population. STUDY DESIGN: Using a population-based representative sample of 64â761 individuals with Down syndrome and a Google Maps Application Programming Interface Python program, we calculated the distance each patient with Down syndrome would need to travel to reach the nearest clinic. Two conceptualizations were used-the state fluidity method, which allowed an individual to cross state lines for care and the state boundary method, which required individuals receive care in their state of residence. RESULTS: Almost 1 in 5 US individuals face significant geographic obstacles to receiving specialty care. This finding is especially prominent in the South, where >33% of patients with Down syndrome must travel >2 hours to reach their nearest clinic. CONCLUSIONS: Down syndrome specialty care clinics are inaccessible to a considerable portion of American society. Innovative usage of technology might be useful to minimize these disparities in healthcare accessibility.