Navigating rare cancer care : patient-reported insights into patient journeys, time to diagnosis, decision-making and care coordination from a national cross-sectional study in Germany

Abstract

Background Evidence on patient pathways, care coordination, and patient needs in rare cancers (RC) is limited but essential for optimising healthcare systems and resource allocation. Addressing these gaps requires country-specific data reflecting national healthcare structures and cultural differences. This is the first study in Germany to explore these dimensions. Methods Using methodological triangulation, we combined a literature review, exploratory interviews, and a cross-sectional anonymous online survey. The survey assessed diagnostic intervals, journeys, care coordination (German Care Coordination Instrument [CCI]), and involvement in medical decision-making (adapted Control Preference Scale) among adult patients with cancer in Germany. Diagnostic intervals were analysed using Kaplan–Meier and Cox regressions methods, CCI predictors using multivariate models. Findings Patients with RC (338 of 1254 participants) reported longer median times from symptom onset to treatment (109 [IQR: 35–326] vs. common cancers (CC): 70 [35−185] days) and from first consultation to diagnosis (28 [14−90] vs. CC: 14 [7−35] days), particularly in rural areas (21 [7−60] vs. urban: 14 [7−42] days) (p < 0.001). Patients with RC more often first consulted general practitioners (65.6 %, CC: 28.1 %), saw more office-based physicians before diagnosis (1.99 [SD: 1.23], CC: 1.66 [0.90]), and were more frequently diagnosed at university hospitals (33.3 %, CC: 11.2 %) (p < 0.001). Discrepancies in preferred levels of involvement in decision-making and higher information needs (RC: 62.9 %, CC: 55.9 %, p = 0.047) were reported. The CCI varied according to cancer types. Interpretation Patients with RC in Germany experience longer diagnostic pathways and fragmented care, highlighting the need for targeted, cross-sectoral care coordination and greater patient empowerment.