A study of disparities in access to genetic care pre‐ and post‐pandemic

• Published in: American journal of medical genetics. Part A 2023-07, Vol.191 (7), p.1704-1710
• Main Authors: Macalino, Ashlee Joan, Porter, Randall S., Smith, Lindsay, Wang, Hongyue, Levin, Alex V.
• Format: Article
• Language: English
• Subjects: access; Adolescent; Child; COVID-19; COVID-19 - epidemiology; Electronic medical records; Ethnicity; Genetic screening; genetics; health disparity; Humans; Insurance, Health; Medicaid; Minority & ethnic groups; Pandemics; Patients; Pediatrics; Retrospective Studies; Telemedicine; United States - epidemiology
• ISSN: 1552-4825; 1552-4833
• DOI: 10.1002/ajmg.a.63191

We aimed to explore the delivery of pediatric genetic care before and during the COVID‐19 pandemic and assess if disparities in care existed or emerged. We retrospectively reviewed the electronic medical record for patients 18 years old or younger seen in the Division of Pediatric Genetics between September 2019–March 2020 and April–October 2020. Outcomes included time between referral and new visit, recommendation and completion of genetic testing and/or follow‐up visit within 6 months, and telemedicine versus in‐person format. Outcomes were compared pre‐ and post‐COVID‐19 emergence across ethnicity, race, age, health insurance, socioeconomic status (SES), and use of medical interpretation services. Three hundred thirteen total records were reviewed with comparable demographics between cohorts. Cohort 2 had shorter times between referral and new visit, greater telemedicine utilization, and a greater proportion of testing completed. Younger patients tended to have shorter times between referral and initial visit. In Cohort 1, those with Medicaid insurance or no coverage had longer referral‐initial visit times. In Cohort 2, there were differences in testing recommendation based on age. For all outcomes, no disparities were observed across ethnicity, race, SES, or use of medical interpretation services. This study characterizes the impact of the pandemic on pediatric genetics care delivery at our center and may have wider implications.