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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

Year: 2025

Type: article

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.

Source: European Journal of Cancer

DOI: 10.1016/j.ejca.2025.115602