ABSTRACT
Background: The COVID-19 pandemic has presented significant challenges to healthcare providers;especially in the treatment of patients with cancer. Many centers have delayed in-person visits by expanding the use of telemedicine (TM). The New Orleans Louisiana Neuroendocrine Tumor Specialists (NOLANETS) is a specialty referral center for patients with neuroendocrine tumors (NET), a rare cancer. This study sought to analyze the experience of TM in patients with a rare cancer and compare their experience with general oncology (Gen Onc) patients. Methods: NET patients completed an online survey conducted by the Neuroendocrine Cancer Awareness Network (NCAN), or an identical mailed paper survey conducted by NOLANETS. Data from these patients were pooled. Gen Onc patients completed the identical online survey using REDCap. Multi-disciplinary oncology physicians completed a unique online survey using REDCap. Results: NET patients (n = 247) rated their overall experience of TM as excellent (47%;n = 116) or good (41%;n = 102), and Gen Onc patients (n = 508) rated their experience as excellent, (54.6%;n = 305) and good (35.2%;n = 197);with no statistical difference between the cohorts. However, NET patients were less likely to agree that all their questions were answered than Gen Onc patients (p < 0.001). Factors associated with suboptimal experience for both cohorts included: telephone format and connection issues. Patients who experienced connection issues were less likely to agree that their questions were answered (NET p = 0.004;Gen Onc p < 0.0001) or that they wanted additional virtual visits (NET p = 0.004;Gen Onc p < 0.0001). NET patients reported a significant difference in the travel required to receive inperson care than Gen Onc patients (p < 0.0001) and significant cost savings associated with TM (p = 0.012). Physicians (n = 51) reported that they were able to effectively care for their patients using TM (88%), however there were significant differences when providers were asked if they were able to provide adequate care for follow-up (FU) visits vs new patient visits vs end-of-life visits (FU vs new, p = 0.000;FU vs End of Life, p < 0.0001;New vs End of Life, p = 0.009). Conclusions: While most NET and Gen Onc patients had a positive experience with TM, connection issues, and audio-only platform significantly decreased the overall experience. Importantly, while NET patients reported a significant cost savings, they were less likely to agree that all their questions were answered when compared to Gen Onc patients. And while most physicians agreed that they were able to effectively care for their patients, additional considerations should be made when new patients or end-of-life patients participate in TM. These results suggest that TM may offer new opportunities for rare-cancer patients but also poses unique challenges.