Life-long, risk-based follow up is recommended for childhood cancer survivors to monitor for treatment-related late effects of therapy as well as to provide ongoing education [13, 29–32]. To our knowledge, our study is the first to report on the patient and caregiver experience of this multidisciplinary follow up as offered through telehealth for survivors of pediatric CNS tumors. Telehealth was reported to be an effective way of receiving multidisciplinary care by both patients and caregivers. The majority of participants reported that telehealth visits were better with regards to travel time and scheduling, and found they were more convenient and associated with less wait times. This is consistent with prior studies that found telehealth eliminated the need for both travel and designated clinical space, increasing the likelihood of staying on schedule [18, 19, 23, 33, 34]. Some oncology patients prefer telehealth, as it permits more inclusive participation for other family members and reduced time off work and/or school [18, 19, 34]. For pediatric CNS tumor survivors, future work is needed to investigate whether the use of telehealth leads to improved health-related hardship and/or improves adherence to recommendations for long-term follow-up and surveillance of late effects.
Despite the reported benefits of telehealth, patients and caregivers in our study were more divided on whether they would like to continue with telehealth and whether telehealth was as effective as office visits. Office visits were considered superior with regards to personal connection and the ability of the provider to visualize or to understand a problem, and adult patients reported this superior connection significantly more than parents/guardians. Although not measured, challenges in sensory impairment and/or cognitive function may have differed between adult patients and caregivers, thereby impacting the results. While a full physical examination that includes cardiorespiratory systems cannot be performed by telehealth, most participants reported that they had undergone a neurologic examination during their visit. Availability of traditional in-person multidisciplinary visit which groups same-day specialty appointments, laboratory testing, imaging and same-day follow-up visits with providers outside of our program may also contribute to visit preferences [19, 33, 34]. Interpersonal relationship building through telehealth remains a challenge for many cancer patients, providers [18, 19, 21, 35, 36], and as we find here, young adult survivors, and is in urgent need of attention and training development [34].
Telehealth operates under the assumption that technology is easily available and reliably accessible by both the care providers and patients [33]. Our study reported minimal difficulty using the telehealth platform or utilizing the technology. Counterintuitively, participants who had to miss in-person appointments more due to transportation issues were significantly less likely to report telehealth as effective. It is possible socioenvironmental factors related to both transportation access and telehealth effectiveness were unaccounted for in the study. In addition to device availability, high-speed Internet access is a significant digital disparity known to disproportionately impact rural, racial/ethnic minority, and lower-income households [37, 38]. Efforts must be made to determine and ultimately reduce any digital divide amongst pediatric CNS tumor survivors [38].
Limitations include the evaluation of a small cohort from a single institution and the potential for response bias in those who opted to participate. Furthermore, a comprehensive validated telehealth assessment tool was not available that is specific to pediatric oncology survivors and their caregivers [39, 40]. Although the use of an ad hoc tool my limit the validity of our findings, the tool was created based on a thorough review of the literature and consensus-based neuro oncology clinical expertise to target issues and concerns specific to our population of interest. As patients and caregivers were sent a link following their telehealth visit, those who opted to complete the survey soon after their visit may have reduced recall bias, whereas this may not hold true for those who completed the survey in a less timely manner. Given that this survey did not capture appointment cancellations, survey responses may overestimate the satisfaction of the group of patients who attended their telehealth visit. As a cross-sectional survey with some patients participating at the beginning of the pandemic and others further into this pandemic, secular trends regarding individuals’ increasing comfort with telehealth use during the pandemic may have influenced survey responses [41]. Finally, our respondent cohort was English-speaking; highly educated; the majority used a private car for transportation; and most did not endorse travel restrictions due to physical mobility or COVID concerns. Therefore, we caution the generalizability of our findings for the larger pediatric CNS tumor survivor population.