Differences in health care experiences between rare cancer and common cancer patients: results from a national cross-sectional survey

• Published in: Orphanet journal of rare diseases Vol. 16; no. 1; pp. 1 - 249
• Main Authors: de Heus, Eline, Engelen, Vivian, Dingemans, Irene, Richel, Carol, Schrieks, Marga, van der Zwan, Jan Maarten, Besselink, Marc G, van Berge Henegouwen, Mark I, van Herpen, Carla M. L, Duijts, Saskia F. A
• Format: Journal Article
• Language: English
• Published: London BioMed Central Ltd 01.06.2021; BioMed Central; BMC
• Subjects: Breast cancer; Cancer; Cancer patients; Care and treatment; Cross-sectional studies; Data collection; Expertise; Health care; Health care disparities; Health care policy; Hospital choice; Hospitals; Medical diagnosis; Medical research; Oncology; Patient experience; Patients; Questionnaires; Rare cancer; Rare diseases; Social networks; Surveys; Urogenital system; Netherlands; Europe
• ISSN: 1750-1172; 1750-1172
• DOI: 10.1186/s13023-021-01886-2

Data were cross-sectionally collected among (former) adult cancer patients through a national online survey in the Netherlands (October 2019). Descriptive statistics were reported and subgroups (rare vs. common patients) were compared. In total, 7343 patients (i.e., 1856 rare and 5487 common cancer patients) participated. Rare cancer patients were more often diagnosed and treated in different hospitals compared to common cancer patients (67% vs. 59%, p < 0.001). Rare cancer patients received treatment more often in a single hospital (60% vs. 57%, p = 0.014), but reported more negative experiences when treated in multiple hospitals than common cancer patients (14% vs. 9%, p < 0.001). They also more often received advise from their physician about the hospital to go to for a second opinion (50% vs. 36%, p < 0.001), were more likely to choose a hospital specialized in their cancer type (33% vs. 22%, p < 0.001), and were more willing to travel as long as necessary to receive specialized care than common cancer patients (55% vs. 47%, p < 0.001). Rare and common cancer patients differ in their health care experiences. Health care for rare cancer patients can be further improved by proper referral to centers of expertise and building a clinical network specifically for rare cancers.