Europe faces an enormous public health challenge with aging populations and rising cancer incidence. Little is known about what concerns the public across European countries regarding cancer care towards the end of life. We aimed to compare the level of public concern with different symptoms and problems in advanced cancer across Europe and examine factors influencing this.
Telephone survey with 9,344 individuals aged ≥16 in England, Flanders, Germany, Italy, Netherlands, Portugal and Spain. Participants were asked about nine symptoms and problems, imagining a situation of advanced cancer with less than one year to live. These were ranked and the three top concerns examined in detail. As ‘burden to others’ showed most variation within and between countries, we determined the relative influence of factors on this concern using GEE and logistic regression.
Overall response rate was 21%. Pain was the top concern in all countries, from 34% participants (Italy) to 49% (Flanders). Burden was second in England, Germany, Italy, Portugal, and Spain. Breathlessness was second in Flanders and the Netherlands. Concern with burden was independently associated with age (70+ years, OR 1.50; 95%CI 1.24-1.82), living alone (OR 0.82, 95%CI 0.73-0.93) and preferring quality rather than quantity of life (OR 1.43, 95%CI 1.14-1.80).
When imagining a last year of life with cancer, the public is not only concerned about medical problems but also about being a burden. Public education about palliative care and symptom control is needed. Cancer care should include a routine assessment and management of social concerns, particularly for older patients with poor prognosis.
We are most grateful to all the survey participants. We thank the European Commission for the financial support needed to undertake this study; BMG Research and ZEM University of Bonn for assistance in survey administration and data collection; Gao Wei, Vicky Simms and Joana Cadima for statistical advice. We also thank our colleagues from PRISMA including the scientific committee who contributed to discussions and scientific review of the survey, namely Stein Kaasa, Natalie Evans, Hamid Benalia, Ana Barros Pinto, Noël Derycke, Martine de Vlieger, Let Dillen, Michael Echteld, Nancy Gikaara, Johan Menten, Bregje Onwuteaka-Philipsen, Robert Pool, Richard A. Powell, Miel Ribbe, Katrin Sigurdardottir, Bart Van den Eynden, Paul Vanden Berghe and Trudie van Iersel. We thank Susana Bento, Carolina Comabella, Filomena Ferreira, Grethe Iversen, Carmen López-Dóriga, Constanze Rémi, Christian Schulz and Wessex Translations for their work translating and backtranslating the questionnaires. The invaluable work of Ron Irwin, Sian Best and Mike Gover at King’s College London is also highly appreciated.
PRISMA was funded by the European Commission’s Seventh Framework Programme (contract number: Health-F2-2008-201655) with the overall aim to co-ordinate high-quality international research into end-of-life cancer care. PRISMA aims to provide evidence and guidance on best practice to ensure that research can measure and improve outcomes for patients and families. PRISMA activities aimed to reflect the preferences and cultural diversities of citizens, the clinical priorities of clinicians, and appropriately measure multidimensional outcomes across settings where end-of-life care is delivered. Principal Investigator: Richard Harding. Scientific Director: Irene J Higginson.