Pediatric central nervous system tumor survivor and caregiver experiences with multidisciplinary telehealth

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. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s11060-023-04281-y.