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

Abstract

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. ResultsWe 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.

Use of Telemedicine in Pediatric Services for 4 Representative Clinical Conditions: Scoping Review

“… Summary of findings for main evaluation domains, classified as "Not reported," "Positive," "Neutral," or "Negative" [ 13 - 68 ]. …”

“…Use in preference to usual care was explored in 4 studies. In 1 study [ 63 ], families reported use of telehealth beyond the coronavirus pandemic was not wanted, and in 3 studies [ 50 , 64 , 68 ], parents emphasized it was wanted to supplement but not substitute in-person clinics.…”

“…A summary of the outcomes, appraisal, and quality of evidence of each of the 56 studies is presented in Table S2 in Multimedia Appendix 1 [ 13 - 68 ]. Across all subgroups, the telemedicine intervention was acceptable or feasible to the patient, their family, or the health care professionals; however, not all studies reported the view of all parties.…”

The impact of rural status on pediatric chronic kidney disease

“…Clinician perceptions of telemedicine clinical encounters are mixed; some remain uncomfortable with or do not desire to continue managing chronic pediatric nephrology conditions, like hypertension, CKD, and transplant by telehealth [ 79 , 80 ]. Conversely, patients/families report mostly favorable views of telehealth, including ease of use without reductions in quality of care and financial savings; however, patients with more complex conditions report favoring in-person care despite longer travel times [ 78 , 81 , 82 ].…”

Providing Optimal Care for Children on Chronic Peritoneal Dialysis during the COVID-19 Pandemic: Challenges in a Resource-Limited Setting

“…[ 4 ] A survey of the Standardising Care to improve Outcomes in Pediatric End-stage kidney disease (SCOPE) centers showed that both health-care providers and caregivers found that telehealth was a feasible mode to monitor children on PD. [ 5 ] In resource-limited countries, where telehealth facilities are not available/easily accessible, remote monitoring is a challenge. This is supported by the International Society of Nephrology- Dialysis Outcomes and Practice Patterns Study (ISN-DOPPS) study, which reported major disruptions in PD supplies in resource-limited regions.…”