Scientific publications

Characteristics of the case mix, organisation and delivery in cancer palliative care: a challenge for good-quality research

Hjermstad MJ (1), Aass N (2), Aielli F (3), Bennett M (4), Brunelli C (5), Caraceni A (5), Cavanna L (6), Fassbender K (7), Feio M (8), Haugen DF (9), Jakobsen G (10), Laird B (11), Løhre ET (12), Martinez M [SP] (13), Nabal M (14), Noguera-Tejedor A (15), Pardon K (16), Pigni A (17), Piva L (18), Porta-Sales J (19), Rizzi F (20), Rondini E (21), Sjøgren P (22), Strasser F (23), Turriziani A (24), Kaasa S (25); European Palliative Care Cancer Symptom study (EPCCS).
(1) Department of Oncology, Regional Centre for Excellence in Palliative Care, Oslo University Hospital, Ullevål, Oslo, Norway Department of Cancer Research and Molecular Medicine, Faculty of Medicine, European Palliative Care Research Centre, Norwegian University of Science and Technology (NTNU), Trondheim, Norway.
(2) Department of Oncology, Regional Centre for Excellence in Palliative Care, Oslo University Hospital, Ullevål, Oslo, Norway Faculty of Medicine, University of Oslo, Oslo, Norway.
(3) Medical Oncology Department, University of L'Aquila, L'Aquila, Italy.
(4) Academic Unit of Palliative Care, Leeds Institute of Health Sciences, University of Leeds, Leeds, UK.
(5) Department of Cancer Research and Molecular Medicine, Faculty of Medicine, European Palliative Care Research Centre, Norwegian University of Science and Technology (NTNU), Trondheim, Norway Pain Therapy and Rehabilitation Unit, Department of Palliative Care, Fondazione IRCCS Istituto Nazionale dei Tumori, Milan, Italy.
(6) Oncology-Hematology Department, Hospital of Piacenza, Piacenza, Italy.
(7) Cross Cancer Institute, Regional Cancer Centre Northern Alberta, Edmonton, Alberta, Canada.
(8) Instituto Português de Oncologia de Lisboa Francisco Gentil, EPE, Lisbon, Portugal.
(9) Department of Cancer Research and Molecular Medicine, Faculty of Medicine, European Palliative Care Research Centre, Norwegian University of Science and Technology (NTNU), Trondheim, Norway Regional Centre of Excellence for Palliative Care, Western Norway, Haukeland University Hospital, Bergen, Norway Department of Clinical Medicine K1, University of Bergen, Bergen, Norway.
(10) Department of Cancer Research and Molecular Medicine, Faculty of Medicine, European Palliative Care Research Centre, Norwegian University of Science and Technology (NTNU), Trondheim, Norway.
(11) Department of Cancer Research and Molecular Medicine, Faculty of Medicine, European Palliative Care Research Centre, Norwegian University of Science and Technology (NTNU), Trondheim, Norway University of Edinburgh, Western General Hospital, Edinburgh, UK.
(12) Cancer Clinic, St Olavs Hospital, Trondheim University Hospital, Trondheim, Norway.
(13) Clínica Universidad de Navarra, Pamplona, Spain.
(14) Hospital Universitario Arnau de Vilanova, Lleida, Spain.
(15) Fundación Vianorte-Laguna, Madrid, Spain.
(16) End-of-Life Care Research Group, Ghent University & Vrije Universiteit Brussel (VUB), Brussels, Belgium Department of Medical Oncology, Ghent University Hospital, Ghent, Belgium.
(17) Pain Therapy and Rehabilitation Unit, Department of Palliative Care, Fondazione IRCCS Istituto Nazionale dei Tumori, Milan, Italy.
(18) Unità di Cure Palliative Azienda Ospedaliera San Paolo, Milan, Italy.
(19) Palliative Care Service, Catalan Institute of Oncology (ICO), Barcelona, Spain Bellvitge Biomedical Research Institute (IDIBELL), WeCare Chair: end of life care, Barcelona, Spain Universitat Internacional de Catalunya, Barcelona, Spain.
(20) U.O. Complessa Cure Palliative e Terapia del Dolore Istituti Clinici di Perfezionamento, Milan, Italy.
(21) Arcispedale Santa Maria Nuova-IRCCS, Reggio Emilia, Italy.
(22) Section of Palliative Medicine, Department of Oncology, Rigshospitalet, Copenhagen, Denmark.
(23) Oncological Palliative Medicine, Oncology Department, Internal Medicine & Palliative Centre Cantonal Hospital, St. Gallen, Switzerland.
(24) Hospice Villa Speranza, Università Cattolica S. Cuore, Rome, Italy.
(25) Department of Cancer Research and Molecular Medicine, Faculty of Medicine, European Palliative Care Research Centre, Norwegian University of Science and Technology (NTNU), Trondheim, Norway Cancer Clinic, St Olavs Hospital, Trondheim University Hospital, Trondheim, Norway. 

Magazine: BMJ Supportive & Palliative Care

Date: May 31, 2016

Palliative Medicine [SP]

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.

CITATION  BMJ Support Palliat Care. 2016 May 31. pii: bmjspcare-2015-000997. doi: 10.1136/bmjspcare-2015-000997

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