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@ARTICLE{Oestreich:302859,
      author       = {L. Oestreich and F. Mumm and T. Pichler and M. Boukovala
                      and V. Colonna and D. Di Gioia and T. Fey and V. Heinemann
                      and J. Hinneburg and J. Lühnen and M. Reichert$^*$ and M.
                      Schoenberg and A. Seitz and K. Spiekermann and C. Spitzweg
                      and A. Steckelberg and S. Theurich and C. Benedikt
                      Westphalen and S. Zacher and D. Zhang and K.
                      Berger-Thürmel$^*$ and M. von Bergwelt-Baildon$^*$},
      collaboration = {T. group},
      title        = {{N}avigating rare cancer care: {P}atient-reported insights
                      into patient journeys, time to diagnosis, decision-making
                      and care coordination from a national cross-sectional study
                      in {G}ermany.},
      journal      = {European journal of cancer},
      volume       = {226},
      issn         = {0959-8049},
      address      = {Amsterdam [u.a.]},
      publisher    = {Elsevier},
      reportid     = {DKFZ-2025-01399},
      pages        = {115602},
      year         = {2025},
      abstract     = {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 $\%,$ 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.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.},
      keywords     = {Care coordination (Other) / Haematology (Other) / Oncology
                      (Other) / Patient journey (Other) / Rare cancers (Other)},
      cin          = {MU01},
      ddc          = {610},
      cid          = {I:(DE-He78)MU01-20160331},
      pnm          = {899 - ohne Topic (POF4-899)},
      pid          = {G:(DE-HGF)POF4-899},
      typ          = {PUB:(DE-HGF)16},
      pubmed       = {pmid:40664162},
      doi          = {10.1016/j.ejca.2025.115602},
      url          = {https://inrepo02.dkfz.de/record/302859},
}