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Characteristics of the case mix, organisation and delivery in cancer palliative care: a challenge for good-quality research
  1. M J Hjermstad1,2,
  2. N Aass1,3,
  3. F Aielli4,
  4. M Bennett5,
  5. C Brunelli2,6,
  6. A Caraceni2,6,
  7. L Cavanna7,
  8. K Fassbender8,
  9. M Feio9,
  10. D F Haugen2,10,11,
  11. G Jakobsen2,
  12. B Laird2,12,
  13. E T Løhre13,
  14. M Martinez14,
  15. M Nabal15,
  16. A Noguera-Tejedor16,
  17. K Pardon17,18,
  18. A Pigni6,
  19. L Piva19,
  20. J Porta-Sales20,21,22,
  21. F Rizzi23,
  22. E Rondini24,
  23. P Sjøgren25,
  24. F Strasser26,
  25. A Turriziani27 and
  26. S Kaasa2,13
  27. on behalf of the European Palliative Care Cancer Symptom study (EPCCS)
  1. 1 Department of Oncology, Regional Centre for Excellence in Palliative Care, Oslo University Hospital, Ullevål, Oslo, Norway
  2. 2 Department of Cancer Research and Molecular Medicine, Faculty of Medicine, European Palliative Care Research Centre, Norwegian University of Science and Technology (NTNU), Trondheim, Norway
  3. 3 Faculty of Medicine, University of Oslo, Oslo, Norway
  4. 4 Medical Oncology Department, University of L'Aquila, L'Aquila, Italy
  5. 5 Academic Unit of Palliative Care, Leeds Institute of Health Sciences, University of Leeds, Leeds, UK
  6. 6 Pain Therapy and Rehabilitation Unit, Department of Palliative Care, Fondazione IRCCS Istituto Nazionale dei Tumori, Milan, Italy
  7. 7 Oncology-Hematology Department, Hospital of Piacenza, Piacenza, Italy
  8. 8 Cross Cancer Institute, Regional Cancer Centre Northern Alberta, Edmonton, Alberta, Canada
  9. 9 Instituto Português de Oncologia de Lisboa Francisco Gentil, EPE, Lisbon, Portugal
  10. 10 Regional Centre of Excellence for Palliative Care, Western Norway, Haukeland University Hospital, Bergen, Norway
  11. 11 Department of Clinical Medicine K1, University of Bergen, Bergen, Norway
  12. 12 University of Edinburgh, Western General Hospital, Edinburgh, UK
  13. 13 Cancer Clinic, St Olavs Hospital, Trondheim University Hospital, Trondheim, Norway
  14. 14 Clínica Universidad de Navarra, Pamplona, Spain
  15. 15 Hospital Universitario Arnau de Vilanova, Lleida, Spain
  16. 16 Fundación Vianorte-Laguna, Madrid, Spain
  17. 17 End-of-Life Care Research Group, Ghent University & Vrije Universiteit Brussel (VUB), Brussels, Belgium
  18. 18 Department of Medical Oncology, Ghent University Hospital, Ghent, Belgium
  19. 19 Unità di Cure Palliative Azienda Ospedaliera San Paolo, Milan, Italy
  20. 20 Palliative Care Service, Catalan Institute of Oncology (ICO), Barcelona, Spain
  21. 21 Bellvitge Biomedical Research Institute (IDIBELL), WeCare Chair: end of life care, Barcelona, Spain
  22. 22 Universitat Internacional de Catalunya, Barcelona, Spain
  23. 23 U.O. Complessa Cure Palliative e Terapia del Dolore Istituti Clinici di Perfezionamento, Milan, Italy
  24. 24 Arcispedale Santa Maria Nuova—IRCCS, Reggio Emilia, Italy
  25. 25 Section of Palliative Medicine, Department of Oncology, Rigshospitalet, Copenhagen, Denmark
  26. 26 Oncological Palliative Medicine, Oncology Department, Internal Medicine & Palliative Centre Cantonal Hospital, St. Gallen, Switzerland
  27. 27 Hospice Villa Speranza, Università Cattolica S. Cuore, Rome, Italy
  1. Correspondence to Dr M J Hjermstad, Department of Oncology, Regional Centre for Excellence in Palliative Care, Oslo University Hospital, Ullevål, Box 4956, Nydalen, Oslo 0424, Norway; marianne.j.hjermstad{at}ntnu.no

Abstract

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.

Trial registration number ClinicalTrials.gov Identifier: NCT01362816.

  • Cancer
  • Palliative Care
  • Survival
  • Patient characteristics
  • Generalisability
  • Integration
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