Parental perceptions of the effect of the COVID-19 pandemic on outpatient services for patients with single ventricle congenital heart disease

Abstract

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 1/1/2010–3/1/2020. The survey assessed the services received and parental satisfaction pre-pandemic, mid-pandemic, and at the time of survey administration (7/2022–2/2023).

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.