TY  - JOUR
AU  - Oestreich, Laura
AU  - Mumm, Friederike
AU  - Pichler, Theresia
AU  - Boukovala, Myrto
AU  - Colonna, Vanessa
AU  - Di Gioia, Dorit
AU  - Fey, Theres
AU  - Heinemann, Volker
AU  - Hinneburg, Jana
AU  - Lühnen, Julia
AU  - Reichert, Maximilian
AU  - Schoenberg, Michael
AU  - Seitz, Anton
AU  - Spiekermann, Karsten
AU  - Spitzweg, Christine
AU  - Steckelberg, Anke
AU  - Theurich, Sebastian
AU  - Benedikt Westphalen, C.
AU  - Zacher, Sandro
AU  - Zhang, Danmei
AU  - Berger-Thürmel, Karin
AU  - von Bergwelt-Baildon, Michael
TI  - 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.
JO  - European journal of cancer
VL  - 226
SN  - 0959-8049
CY  - Amsterdam [u.a.]
PB  - Elsevier
M1  - DKFZ-2025-01399
SP  - 115602
PY  - 2025
AB  - 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 
KW  - Care coordination (Other)
KW  - Haematology (Other)
KW  - Oncology (Other)
KW  - Patient journey (Other)
KW  - Rare cancers (Other)
LB  - PUB:(DE-HGF)16
C6  - pmid:40664162
DO  - DOI:10.1016/j.ejca.2025.115602
UR  - https://inrepo02.dkfz.de/record/302859
ER  -