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

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.

Metadata

Item Type:	Article
Authors/Creators:	Hjermstad, MJ Aass, N Aielli, F Bennett, M https://orcid.org/0000-0002-8369-8349 Brunelli, C Caraceni, A Cavanna, L Fassbender, K Feio, M Haugen, DF Jakobsen, G Laird, B Løhre, ET Martinez, M Nabal, M Noguera-Tejedor, A Pardon, K Pigni, A Piva, L Porta-Sales, J Rizzi, F Rondini, E Sjøgren, P Strasser, F Turriziani, A Kaasa, S
Copyright, Publisher and Additional Information:	© 2018, British Medical Journal. This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work noncommercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/bync/4.0/
Keywords:	Cancer; Generalisability; Integration; Palliative Care; Patient characteristics; Survival
Dates:	Accepted: 10 May 2016 Published (online): 31 May 2016 Published: December 2018
Institution:	The University of Leeds
Depositing User:	Symplectic Publications
Date Deposited:	20 Jun 2016 15:07
Last Modified:	23 Jun 2023 22:08
Status:	Published
Publisher:	BMJ Publishing Group
Identification Number:	10.1136/bmjspcare-2015-000997
Open Archives Initiative ID (OAI ID):	oai:eprints.whiterose.ac.uk:101179

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

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