Caraceni, A. (A.)

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    Characteristics of the case mix, organisation and delivery in cancer palliative care: a challenge for good-quality research
    (BMJ Publishing Group, 2018) Noguera, A. (Antonio); Martinez-Garcia, M. (Marina); Løhre, E.T. (E. T.); Fassbender, K. (K.); Jakobsen, G. (G.); Pardon, K. (K.); Rondini, E. (E.); Hjermstad, M.J. (M. J.); Turriziani, A. (A.); Aielli, F. (F.); Porta-Sales, J. (Josep); Piva, L. (L.); Cavanna, L. (L.); Nabal, M. (María); Pigni, A. (A.); Haugen, D.F. (D. F.); Feio, M. (M.); Strasser, F. (F.); Bennett, M. (M.); Brunelli, C. (C.); Rizzi, F. (F.); Caraceni, A. (A.); Sjøgren, P. (P.); Laird, B. (B.); Kaasa, S. (S.); Aass, N. (N.)
    Objectives: Palliative care (PC) services and patients differ across countries. Data on PC delivery paired with medical and self-reported data are seldom reported. Aims were to describe (1) PC organisation and services in participating centres and (2) characteristics of patients in PC programmes. Methods: This was an international prospective multicentre study with a single web-based survey on PC organisation, services and academics and patients' self-reported symptoms collected at baseline and monthly thereafter, with concurrent registrations of medical data by healthcare providers. Participants were patients ≥18 enrolled in a PC programme. Results: 30 centres in 12 countries participated; 24 hospitals, 4 hospices, 1 nursing home, 1 home-care service. 22 centres (73%) had PC in-house teams and inpatient and outpatient services. 20 centres (67%) had integral chemotherapy/radiotherapy services, and most (28/30) had access to general medical or oncology inpatient units. Physicians or nurses were present 24 hours/7 days in 50% and 60% of centres, respectively. 50 centres (50%) had professorships, and 12 centres (40%) had full-time/part-time research staff. Data were available on 1698 patients: 50% females; median age 66 (range 21-97); median Karnofsky score 70 (10-100); 1409 patients (83%) had metastatic/disseminated disease; tiredness and pain in the past 24 hours were most prominent. During follow-up, 1060 patients (62%) died; 450 (44%) <3 months from inclusion and 701 (68%) within 6 months. ANOVA and χ2 tests showed that hospice/nursing home patients were significantly older, had poorer performance status and had shorter survival compared with hospital-patients (p<.0.001). Conclusions: There is a wide variation in PC services and patients across Europe. Detailed characterisation is the first step in improving PC services and research.