A Mixed-Methods Study to Explore Healthcare Utilization Among Children and Adolescents With Sickle Cell Disease During the COVID-19 Pandemic

BackgroundThe purpose of this study was to explore healthcare utilization among children with sickle cell disease (SCD) during the COVID-19 pandemic using a concurrent mixed-methods study design.Method and SampleTrends in healthcare encounters were examined across the institutional SCD population from September 2019 through February 2021. A convenience sample of children with SCD (8-17 years of age) and their parent/caregiver completed the COVID-19 Exposure and Family Impact Scale and a semistructured interview. Patients were eligible if they had a history of high hospital utilization (HHU; ≥5 admissions in 2019) or moderate HHU (MODHU; ≥2 ED visits or 2-4 admissions in 2019). Differences in outcomes by HHU status were assessed using Fisher's exact and Wilcoxon rank sum tests. Qualitative data were analyzed using thematic analysis.ResultsAcross the institutional SCD population (<i>N</i> = 2,153), healthcare encounters decreased in the early pandemic, returning close to baseline mid-pandemic. The sample (<i>N</i> = 16) was 75% (<i>n</i> = 12) male, 50% (<i>n</i> = 8) HHU, and median age 13.1 years; all parent participants were mothers. The MODHU group reported a more negative impact of COVID-19 on family functioning compared with the HHU group (<i>p</i> = .03), while distress was similarly high across both groups. Parents believed reduced exposure to infection, greater control over environmental triggers, and management of pain at home resulted in fewer healthcare visits. Parents described child distress as related to social isolation and virtual school.ConclusionWith reduced exposure to illness triggers, healthcare utilization for children with SCD decreased during the pandemic, although social isolation was associated with distress.