Parental Perceptions of the Effect of the Covid-19 Pandemic on Outpatient Services for Patients with Single Ventricle Congenital Heart Disease

Background: Patients with congenital heart disease (CHD), particularly single ventricle CHD, may experience neurodevelopmental delays. The COVID-19 pandemic created numerous challenges surrounding access to care. This study evaluates the effect of the pandemic on delivery of outpatient therapies to this high-risk group, and satisfaction with services.Objectives: To determine the effect of the pandemic on the delivery of outpatient therapies to patients with SV-CHD at our center, as well as parental satisfaction, at various time points.Methods: A survey was administered to parents of patients with single ventricle CHD regarding services at various stages of the pandemic. Patients were eligible if they had a bidirectional Glenn operation between 1/1/10-3/1/20. The survey assessed the services received and parental satisfaction pre-pandemic, mid-pandemic, and at the time of survey administration.Results: Of 228 eligible patients, 133 were contacted and 36 (27%) completed the survey. Nineteen (52.8%) had a child with developmental delay. During the pandemic, 84% (n=16/19) of patients who qualified for services were receiving them. Services were largely virtual or hybrid (n=12/16, 75%), compared to 100% in-person pre-pandemic and at the time of survey completion. Satisfaction with services during the pandemic was low, with 12.5% (n=2/16) stating they were “extremely satisfied”, compared with 93.3% (n=14/15) pre-pandemic and 46.7% (n=7/15) at the time of survey completion.Conclusion: In our study, patients with single ventricle CHD continued to receive outpatient services during the pandemic; however, these services were largely virtual and satisfaction was low. By the time of survey completion, services had returned in-person with improvement in satisfaction. More studies are needed to elucidate if changes in the delivery of services during the pandemic may have affected neurodevelopmental status in this high-risk group.