Telehealth survey of providers and caregivers of children on peritoneal dialysis during the COVID-19 pandemic

BACKGROUND: There has been growing support for the adoption of telehealth (TH) services in pediatric populations. Children on chronic peritoneal dialysis (PD) represent a vulnerable population that could benefit from increased use of TH. The COVID-19 pandemic prompted rapid adoption of TH services in the population among pediatric centers participating in The Children’s Hospital Association’s Standardizing Care to Improve Outcomes in Pediatric ESKD (SCOPE) Collaborative. METHODS: We developed a survey to explore the experience of both pediatric PD providers and caregivers of patients receiving PD care at home and using TH services during the COVID-19 pandemic. RESULTS: We obtained responses from 27 out of 53 (50.9%) SCOPE centers that included 175 completed surveys from providers and caregivers. Major challenges identified by providers included inadequate/lack of physical exam, inability to visit with the patient/family in-person, and inadequate/lack of PD catheter exit site exam. Only 51% of caregivers desired future TH visits; however, major benefits of TH for caregivers included no travel, visit takes less time, easier to care for other children, more comfortable for patient, and no time off from work. Providers and caregivers agreed that PD TH visits are family centered (p = 0.296), with the lack of a physical exam (p < 0.001) and the inability to meet in-person (p = 0.002) deemed particularly important to caregivers and providers, respectively. CONCLUSIONS: TH is a productive and viable visit option for children on PD; however, making this a successful, permanent part of routine care will require an individualized approach with standardization of core elements. GRAPHICAL ABSTRACT: A higher resolution version of the Graphical abstract is available as Supplementary information. [Image: see text] SUPPLEMENTARY INFORMATION: The online version contains supplementary material including a graphical abstract available at 10.1007/s00467-022-05543-z.