%0 Journal Article
%A Oestreich, Laura
%A Mumm, Friederike
%A Pichler, Theresia
%A Boukovala, Myrto
%A Colonna, Vanessa
%A Di Gioia, Dorit
%A Fey, Theres
%A Heinemann, Volker
%A Hinneburg, Jana
%A Lühnen, Julia
%A Reichert, Maximilian
%A Schoenberg, Michael
%A Seitz, Anton
%A Spiekermann, Karsten
%A Spitzweg, Christine
%A Steckelberg, Anke
%A Theurich, Sebastian
%A Benedikt Westphalen, C.
%A Zacher, Sandro
%A Zhang, Danmei
%A Berger-Thürmel, Karin
%A von Bergwelt-Baildon, Michael
%T 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.
%J European journal of cancer
%V 226
%@ 0959-8049
%C Amsterdam [u.a.]
%I Elsevier
%M DKFZ-2025-01399
%P 115602
%D 2025
%X 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.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.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 
%K Care coordination (Other)
%K Haematology (Other)
%K Oncology (Other)
%K Patient journey (Other)
%K Rare cancers (Other)
%F PUB:(DE-HGF)16
%9 Journal Article
%$ pmid:40664162
%R 10.1016/j.ejca.2025.115602
%U https://inrepo02.dkfz.de/record/302859