Purpose: Telehealth use to facilitate cancer survivorship care is accelerating; however, patient satisfaction and barriers to facilitation have not been studied amongst pediatric central nervous system (CNS) tumor survivors. We assessed the telehealth experiences of survivors and caregivers in the Pediatric Neuro-Oncology Outcomes Clinic at Dana-Farber/ Boston Children’s Hospital. Methods: Cross-sectional study of completed surveys among patients and caregivers with ≥ 1 telehealth multidisciplinary survivorship appointment from January 2021 through March 2022. Results: Thirty-three adult survivors and 41 caregivers participated. The majority agreed or strongly agreed that telehealth visits started on time [65/67 (97%)], scheduling was convenient [59/61 (97%)], clinician’s explanations were easy-to-understand [59/61 (97%)], listened carefully/addressed concerns [56/60 (93%)], and spent enough time with them [56/59 (95%)]. However, only 58% (n=35/60) of respondents agreed or strongly agreed they would like to continue with telehealth and 48% (n=32/67) agreed telehealth was as effective as in person office visits. Adult survivors were more likely than caregivers to prefer office visits for personal connection [23/32 (72%) vs 18/39 (46%), p=0.027]. Conclusion: Offering telehealth multi-disciplinary services may provide more efficient and accessible care for a subset of pediatric CNS tumor survivors. Despite some advantages, patients and caregivers were divided on whether they would like to continue with telehealth and whether telehealth was as effective as office visits. To improve survivor and caregiver satisfaction, initiatives to refine patient selection as well as enhance personal communication through telehealth systems should be undertaken.

Central nervous system (CNS) tumors are the second most common pediatric cancer; survivors develop chronic medical conditions and complex care needs. While telemedicine is accelerating, its effectiveness has not been assessed in pediatric CNS tumor survivors. We evaluated the experiences of those seen through our Pediatric Neuro-Oncology Survivorship Clinic at Dana-Farber/ Boston Children’s Cancer and Blood Disorder Center. Patients and caregivers who had a multi-disciplinary telemedicine survivorship appointment from January 2021 through March 2022 were invited to participate in an anonymous survey which included questions on demographics, travel, equipment, experiences with telehealth, and preferences for telehealth utilization. Thirty-three adult survivors and 41 caregivers participated in the study (45% response rate). The majority of respondents agreed or strongly agreed that telemedicine visits started on time (97%, Nf65), scheduling was convenient (97%, Nf59), clinicians explained things in an easy-to-understand way (97%, Nf59), listened carefully and addressed concerns (93%, Nf56), and spent enough time with them (95%, Nf56). However, only 58% (Nf35) of respondents agreed or strongly agreed they would like to continue with telemedicine and only 48% (Nf32) agreed telemedicine was as effective as office visits. In our univariable analysis, the majority of respondents reported telemedicine as better with regards to travel time (82%, Nf60), convenience (68%, Nf50), wait time (70%, Nf50), and ease of scheduling (56%, Nf40), while the majority reported office visits as better with regards to personal connection (58%, Nf41). Survivors were more likely than caregivers to prefer office visits for personal connection (72% vs 46%, p=0.027). The most common telemedicine difficulties were using the system (15%, Nf11) and asking questions they would normally ask in clinic (19%, Nf14). While multi-disciplinary telehealth may improve care efficiency and accessibility for pediatric CNS tumor survivors, initiatives to improve personal connection are necessary to optimize patient satisfaction.

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