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Open Access Research article

‘Burden to others’ as a public concern in advanced cancer: a comparative survey in seven European countries

Claudia Bausewein123*, Natalia Calanzani1, Barbara A Daveson1, Steffen T Simon345, Pedro L Ferreira6, Irene J Higginson1, Dorothee Bechinger-English1, Luc Deliens117, Marjolein Gysels8, Franco Toscani9, Lucas Ceulemans10, Richard Harding1, Barbara Gomes1 and on behalf of PRISMA

Author Affiliations

1 Department of Palliative Care, Policy & Rehabilitation, Cicely Saunders Institute, King’s College London, London, UK

2 Interdisciplinary Centre for Palliative Medicine, University Hospital Munich, Munich, Germany

3 Deutsche Gesellschaft für Palliativmedizin, Berlin, Germany

4 Institute of Palliative Care (IPAC), Oldenburg, Germany

5 Department of Palliative Medicine, University Hospital Cologne, Cologne, BMBF 01KN1106, Germany

6 Centre for Health Studies and Research, University of Coimbra (CEISUC), Coimbra, Portugal

7 End-of-Life Care Research Group, Ghent University & Vrije Universiteit Brussel, Brussels, Belgium

8 Barcelona Centre for International Health Research (CRESIB – Hospital Clínic), Universitat de Barcelona, Barcelona, Spain

9 Istituto di Ricerca in Medicina Palliativa, Fondazione Lino Maestroni -ONLUS, Cremona, Italy

10 University Antwerp, Antwerp, Belgium

11 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

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BMC Cancer 2013, 13:105  doi:10.1186/1471-2407-13-105

Published: 8 March 2013

Abstract

Background

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.

Methods

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.

Results

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).

Conclusions

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.