R Harding1, V Simms1,2, N Calanzani1, I J Higginson1, S Hall1, M Gysels3, A Meñaca3, C Bausewein1,4, L Deliens5,6, P Ferreira7, F Toscani8, B A Daveson1, L Ceulemans9, B Gomes1. 1. King's College London, Cicely Saunders Institute, Department of Palliative Care, Policy & Rehabilitation, London, SE5 9PJ, UK. 2. London School of Hygiene and Tropical Medicine, London, UK. 3. Barcelona Centre for International Health Research (CRESIB - Hospital Clínic), Universitat de Barcelona, Barcelona, Spain. 4. Deutsche Gesellschaft für Palliativmedizin, Berlin, Germany. 5. End-of-Life Care Research Group, Ghent University & Vrije Universiteit Brussel, Brussels, Belgium. 6. Department of Public and Occupational Health, EMGO Institute for Health and Care Research, Palliative Care Center of Expertise, VU University Medical Center, Amsterdam, the Netherlands. 7. Centre for Health Studies and Research, University of Coimbra (CEISUC), Coimbra, Portugal. 8. Istituto di Ricerca in Medicina Palliativa, Fondazione Lino Maestroni - ONLUS, Cremona, Italy. 9. University of Antwerp, Antwerp, Belgium.
Abstract
OBJECTIVE: With increasing European cancer deaths, clinicians must manage information regarding poor prognosis. This study aimed to determine European citizens' preferences, within a scenario of serious illness such as cancer with less than a year to live, for information disclosure regarding poor prognosis, the likely symptoms and problems, and the care options available, to measure variations between countries and to identify factors associated with preferences. METHODS: A population-based cross-national telephone survey using random digit dialling in seven countries was conducted. RESULTS: Among 9344 respondents, data revealed an international preference (73.9%) to always be informed in the scenario of having a serious illness such as cancer with less than a year to live. This varied from 67.6% in Italy to 80.7% in Flanders. A minority (21.1%) did not want such information unless they ask, or at all. People younger than 70 years (OR 0.72, 95% CI 0.62-0.83, p < 0.001), men (OR 1.23, 95% CI 1.10-1.37, p < 0.001), those with experience of illness (OR = 1.20. 95% CI 1.01-1.43, p < 0.05) and with more education (OR = 1.20, 95% CI 1.09-1.32, p < 0.001) were more likely to want to know of limited time left. CONCLUSIONS: The models confirmed the influence of four factors in more than one country (age, gender, education and most concerning problem) and added 11 country-specific factors to which national policies and clinical practice should respond. These findings confirm a majority public preference to be informed in a scenario of poor prognosis. Policy clinical practice should facilitate elucidation and delivery of preferences. Evidence for effective communication skills-building interventions for clinicians is required.
OBJECTIVE: With increasing European cancer deaths, clinicians must manage information regarding poor prognosis. This study aimed to determine European citizens' preferences, within a scenario of serious illness such as cancer with less than a year to live, for information disclosure regarding poor prognosis, the likely symptoms and problems, and the care options available, to measure variations between countries and to identify factors associated with preferences. METHODS: A population-based cross-national telephone survey using random digit dialling in seven countries was conducted. RESULTS: Among 9344 respondents, data revealed an international preference (73.9%) to always be informed in the scenario of having a serious illness such as cancer with less than a year to live. This varied from 67.6% in Italy to 80.7% in Flanders. A minority (21.1%) did not want such information unless they ask, or at all. People younger than 70 years (OR 0.72, 95% CI 0.62-0.83, p < 0.001), men (OR 1.23, 95% CI 1.10-1.37, p < 0.001), those with experience of illness (OR = 1.20. 95% CI 1.01-1.43, p < 0.05) and with more education (OR = 1.20, 95% CI 1.09-1.32, p < 0.001) were more likely to want to know of limited time left. CONCLUSIONS: The models confirmed the influence of four factors in more than one country (age, gender, education and most concerning problem) and added 11 country-specific factors to which national policies and clinical practice should respond. These findings confirm a majority public preference to be informed in a scenario of poor prognosis. Policy clinical practice should facilitate elucidation and delivery of preferences. Evidence for effective communication skills-building interventions for clinicians is required.
Authors: Natalia Calanzani; Katrien Moens; Joachim Cohen; Irene J Higginson; Richard Harding; Luc Deliens; Franco Toscani; Pedro L Ferreira; Claudia Bausewein; Barbara A Daveson; Marjolein Gysels; Lucas Ceulemans; Barbara Gomes Journal: BMC Palliat Care Date: 2014-10-23 Impact factor: 3.234
Authors: J Koffman; E Yorganci; D Yi; W Gao; F Murtagh; A Pickles; S Barclay; H Johnson; R Wilson; L Sampson; J Droney; M Farquhar; T Prevost; C J Evans Journal: Trials Date: 2019-08-16 Impact factor: 2.279
Authors: N C A van der Velden; M B A van der Kleij; V Lehmann; E M A Smets; J M L Stouthard; I Henselmans; M A Hillen Journal: Int J Environ Res Public Health Date: 2021-05-26 Impact factor: 3.390
Authors: Julia Downing; Barbara Gomes; Nancy Gikaara; Grace Munene; Barbara A Daveson; Richard A Powell; Faith N Mwangi-Powell; Irene J Higginson; Richard Harding Journal: BMC Palliat Care Date: 2014-02-15 Impact factor: 3.234
Authors: Muhammad M Hammami; Kafa Abuhdeeb; Muhammad B Hammami; Sophia J S De Padua; Areej Al-Balkhi Journal: BMC Med Ethics Date: 2019-05-03 Impact factor: 2.652