If you had less than a year to live, would you want to know? A seven-country European population survey of public preferences for disclosure of poor prognosis

Richard Harding, V. Simms, N. Calanzani, I.J. Higginson, S. Hall, M. Gysels, A. Meñaca, C. Bausewein, L. Deliens, P. Ferreira, F. Toscani, B.A. Daveson, L. Ceulemans, B. Gomes

Research output: Contribution to journalArticlepeer-review

49 Citations (Scopus)


Objective: With increasing European cancer deaths, clinicians must manage information regardingpoor prognosis. This study aimed to determine European citizens’preferences, within a scenario ofserious illness such as cancer with less than a year to live, for information disclosure regarding poorprognosis, the likely symptoms and problems, and the care options available, to measure variationsbetween countries and to identify factors associated with preferences.Methods: A population-based cross-national telephone survey using random digit dialling in sevencountries was conducted.Results: Among 9344 respondents, data revealed an international preference (73.9%) to always beinformed in the scenario of having a serious illness such as cancer with less than a year to live. Thisvaried from 67.6% in Italy to 80.7% in Flanders. A minority (21.1%) did not want such informationunless they ask, or at all. People younger than 70 years (OR 0.72, 95% CI 0.62–0.83,p
Original languageEnglish
Pages (from-to)2298-2305
Number of pages8
Early online date18 Mar 2013
Publication statusPublished - 18 Mar 2013

Bibliographical note

We are most grateful to all the survey participants. We thank theEuropean Commission for thefinancial support needed to undertakethis study, BMG Research and ZEM University of Bonn for assistancein survey administration and data collection, and Gao Wei and JoanaCadima for statistical advice. We also thank our colleagues fromPRISMA including the scientific committee who contributed todiscussions and scientific review of the survey, namely, HamidBenalia, Emma Bennett, Lucy Bradley, Noël Derycke, Martine deVlieger, Let Dillen, Natalie Evans, Michael Echteld, Nancy Gikaara,Stein Kaasa, Johan Menten, Bregje Onwuteaka-Philipsen, Ana BarrosPinto, Robert Pool, Richard A. Powell, Miel Ribbe, KatrinSigurdardottir, Bart Van den Eynden, Paul Vanden Berghe and Trudievan Iersel. We thank Susana Bento, Carolina Comabella, FilomenaFerreira, Grethe Iversen, Carmen López-Dóriga, Constanze Rémi,Christian Schulz and Wessex Translations for their work translatingand back-translating the questionnaires. The invaluable work of RonIrwin, Sian Best and Mike Gover at King’s College London is alsohighly appreciated. This work was supported by the EuropeanCommission’s Seventh Framework Programme (contract number:Health-F2-2008-201655). PRISMA was funded by the EuropeanCommission’s Seventh Framework Programme with the overall aimto co-ordinate high-quality international research into end-of-lifecancer care. PRISMA aims to provide evidence and guidance on bestpractice to ensure that research can measure and improve outcomes for patients and families. PRISMA activities aim to reflect the prefer-ences and cultural diversities of citizens, the clinical priorities of clini-cians, and appropriately measure multidimensional outcomes acrosssettings where EoLC is delivered. Principal Investigator: Richard Har-ding. Scientific Director: Irene J Higginson. This article reflects onlythe author’s views and the European Commission is not liable forany use that may be made of the information contained therein. Thefunder had no role in the study design, in the collection, analysisand interpretation of data, in the writing of this manuscript, or in thedecision to submit this manuscript for publication.


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