title: Characteristics of the case mix, organisation and delivery in cancer palliative care: a challenge for good-quality research.
abstract: OBJECTIVE
  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 χ2tests 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.
  
  
  BACKGROUND
  ClinicalTrials.gov Identifier: NCT01362816.
authors.affiliation: 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.
authors.forename: M J
authors.initials: MJ
authors.lastname: Hjermstad
authors.affiliation: Department of Oncology, Regional Centre for Excellence in Palliative Care, Oslo University Hospital, Ullevål, Oslo, Norway.|Faculty of Medicine, University of Oslo, Oslo, Norway.
authors.forename: N
authors.initials: N
authors.lastname: Aass
authors.affiliation: Medical Oncology Department, University of L'Aquila, L'Aquila, Italy.
authors.forename: F
authors.initials: F
authors.lastname: Aielli
authors.affiliation: Academic Unit of Palliative Care, Leeds Institute of Health Sciences, University of Leeds, Leeds, UK.
authors.forename: M
authors.initials: M
authors.lastname: Bennett
authors.affiliation: 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.
authors.forename: C
authors.initials: C
authors.lastname: Brunelli
authors.affiliation: 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.
authors.forename: A
authors.initials: A
authors.lastname: Caraceni
authors.affiliation: Oncology-Hematology Department, Hospital of Piacenza, Piacenza, Italy.
authors.forename: L
authors.initials: L
authors.lastname: Cavanna
authors.affiliation: Cross Cancer Institute, Regional Cancer Centre Northern Alberta, Edmonton, Alberta, Canada.
authors.forename: K
authors.initials: K
authors.lastname: Fassbender
authors.affiliation: Instituto Português de Oncologia de Lisboa Francisco Gentil, EPE, Lisbon, Portugal.
authors.forename: M
authors.initials: M
authors.lastname: Feio
authors.affiliation: 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.
authors.forename: D F
authors.initials: DF
authors.lastname: Haugen
authors.affiliation: Department of Cancer Research and Molecular Medicine, Faculty of Medicine, European Palliative Care Research Centre, Norwegian University of Science and Technology (NTNU), Trondheim, Norway.
authors.forename: G
authors.initials: G
authors.lastname: Jakobsen
authors.affiliation: 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.
authors.forename: B
authors.initials: B
authors.lastname: Laird
authors.affiliation: Cancer Clinic, St Olavs Hospital, Trondheim University Hospital, Trondheim, Norway.
authors.forename: E T
authors.initials: ET
authors.lastname: Løhre
authors.affiliation: Clínica Universidad de Navarra, Pamplona, Spain.
authors.forename: M
authors.initials: M
authors.lastname: Martinez
authors.affiliation: Hospital Universitario Arnau de Vilanova, Lleida, Spain.
authors.forename: M
authors.initials: M
authors.lastname: Nabal
authors.affiliation: Fundación Vianorte-Laguna, Madrid, Spain.
authors.forename: A
authors.initials: A
authors.lastname: Noguera-Tejedor
authors.affiliation: End-of-Life Care Research Group, Ghent University & Vrije Universiteit Brussel (VUB), Brussels, Belgium.|Department of Medical Oncology, Ghent University Hospital, Ghent, Belgium.
authors.forename: K
authors.initials: K
authors.lastname: Pardon
authors.affiliation: Pain Therapy and Rehabilitation Unit, Department of Palliative Care, Fondazione IRCCS Istituto Nazionale dei Tumori, Milan, Italy.
authors.forename: A
authors.initials: A
authors.lastname: Pigni
authors.affiliation: Unità di Cure Palliative Azienda Ospedaliera San Paolo, Milan, Italy.
authors.forename: L
authors.initials: L
authors.lastname: Piva
authors.affiliation: 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.
authors.forename: J
authors.initials: J
authors.lastname: Porta-Sales
authors.affiliation: U.O. Complessa Cure Palliative e Terapia del Dolore Istituti Clinici di Perfezionamento, Milan, Italy.
authors.forename: F
authors.initials: F
authors.lastname: Rizzi
authors.affiliation: Arcispedale Santa Maria Nuova-IRCCS, Reggio Emilia, Italy.
authors.forename: E
authors.initials: E
authors.lastname: Rondini
authors.affiliation: Section of Palliative Medicine, Department of Oncology, Rigshospitalet, Copenhagen, Denmark.
authors.forename: P
authors.initials: P
authors.lastname: Sjøgren
authors.affiliation: Oncological Palliative Medicine, Oncology Department, Internal Medicine & Palliative Centre Cantonal Hospital, St. Gallen, Switzerland.
authors.forename: F
authors.initials: F
authors.lastname: Strasser
authors.affiliation: Hospice Villa Speranza, Università Cattolica S. Cuore, Rome, Italy.
authors.forename: A
authors.initials: A
authors.lastname: Turriziani
authors.affiliation: 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.
authors.forename: S
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mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D003695:Delivery of Health Care / Q000379:methods / Q000458:organization & administration / Q000706:statistics & numerical data*; D003953:Diagnosis-Related Groups / Q000706:statistics & numerical data*; D005060:Europe; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D009369:Neoplasms / Q000451:nursing*; D010166:Palliative Care / Q000379:methods / Q000458:organization & administration / Q000706:statistics & numerical data*; D011446:Prospective Studies; D011795:Surveys and Questionnaires; D055815:Young Adult
keywords: Cancer; Generalisability; Integration; Palliative Care; Patient characteristics; Survival