Travel burden associated with rare cancers: The example of Merkel cell carcinoma

Abstract

Background There are limited data on the travel burden for cancer patients with rare tumor types, such as Merkel cell carcinoma (MCC). Objective The objective of this study was to understand the travel burden of MCC patients. Methods This study used data from an MCC registry at the Seattle Cancer Care Alliance (SCCA). All MCC patients enrolled at SCCA with a valid 3‐digit ZIP code were included. Patients were followed up from January 1, 2012 until their last follow‐up, death, or end of data (January 1, 2017). Travel burden was measured by one‐way travel distance to SCCA from each patient's 3‐digit ZIP code. Patient demographics, tumor characteristics, and follow‐up visit were evaluated and stratified by one‐way driving distance of ≤300 and >300 miles. Results A total of 391 MCC patients were included (68% men, mean age = 67 years [±SD = ±11 years], 67% residing in the West, and 70% white). At diagnosis, 53% of the patients had Stage III or IV MCC. Mean one‐way distance traveled by patients was 1,137 (median: 813) miles, and 57% of patients traveled >300 miles. Compared to patients who traveled ≤300 miles, those who traveled >300 miles were more likely to be <70 years old (46% vs 65%; P < 0.001), were diagnosed with advanced stage (III or IV) MCC (46% vs 59%; P = 0.01), had shorter follow‐up in the cancer registry (mean: 509 vs 212 days; P < 0.001), and had fewer visits during follow‐up (mean: 5.2 vs 2.5; P < 0.001). Conclusions In this single cancer center study, the majority of MCC patients trav‐eled long distances to receive expert care. Longer travel distances appeared to be associated with younger age, a more advanced stage of cancer at study entry and fewer in‐clinic visits, suggesting that travel burden may impact timely and adequate patient care for this rare cancer.

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“…Our experience with telemedicine-based care provision in sarcomas can serve as a model for other rare cancers. Similar to other patients with rare cancers, 11 patients treated by our unit travel long distances for care. Patients preferred telemedicine because of travel distance and cost.…”

“…Patients with rare cancers often require management at expert centers. 9 However, because patients often live a long distance from such centers, 10 , 11 geography can be a barrier to care. Sarcomas are a distinct group of rare cancers with > 50 histologic subtypes.…”

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