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

Marianne Jensen Hjermstad, Nina Aass, Federica Aielli, M. Bennett, C Brunelli, A Caraceni, L. Cavanna, Klaus Fassbender, M Feio, Dagny Faksvåg Haugen, G Jakobsen, Barry Laird, Erik T. Løhre, M. Martinez, M. Nabal, A Noguera-Tejedor, Koen Pardon, A Pigni, L Piva, Josep Porta-SalesF. Rizzi, E Rondini, Per Sjøgren, F. Strasser, Adriana Turriziani, S. Kaasa, European Palliative Care Cancer Symptom study (EPCCS)

Research output: Contribution to journalArticle

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 χ(2) 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.

Original languageEnglish
JournalBMJ Supportive and Palliative Care
DOIs
Publication statusE-pub ahead of print - May 31 2016

Keywords

  • Journal Article

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    Jensen Hjermstad, M., Aass, N., Aielli, F., Bennett, M., Brunelli, C., Caraceni, A., Cavanna, L., Fassbender, K., Feio, M., Haugen, D. F., Jakobsen, G., Laird, B., Løhre, E. T., Martinez, M., Nabal, M., Noguera-Tejedor, A., Pardon, K., Pigni, A., Piva, L., ... European Palliative Care Cancer Symptom study (EPCCS) (2016). Characteristics of the case mix, organisation and delivery in cancer palliative care: a challenge for good-quality research. BMJ Supportive and Palliative Care. https://doi.org/10.1136/bmjspcare-2015-000997