Burden on family carers and care-related financial strain at the end of life: A cross-national population-based study

Lara Pivodic, Lieve Van Den Block, Koen Pardon, Guido Miccinesi, Tomás Vega Alonso, Nicole Boffin, Gé A. Donker, Maurizio Cancian, Aurora López-Maside, Bregje D. Onwuteaka-Philipsen, Luc Deliens, De Groote Zeger, Brearley Sarah, Caraceni Augusto, Cohen Joachim, Francke Anneke, Harding Richard, J. Higginson Irene, Kaasa Stein, Linden KarenPasman Roeline, Pautex Sophie, Payne Sheila

Research output: Contribution to journalArticlepeer-review


Background: The rising number of deaths from cancer and other life-limiting illnesses is accompanied by a growing number of family carers who provide long-lasting care, including end-of-life care. This population-based epidemiological study aimed to describe and compare in four European countries the prevalence of and factors associated with physical or emotional overburden and difficulties in covering care-related costs among family carers of people at the end of life. Methods: A cross-national retrospective study was conducted via nationwide representative sentinel networks of general practitioners (GPs). Using a standardized form, GPs in Belgium, The Netherlands, Italy and Spain recorded information on the last 3 months of life of every deceased adult practice patient (1 January 2009-31 December 2010). Sudden deaths were excluded. Results: We studied 4466 deaths. GPs judged family carers of 28% (Belgium), 30% (The Netherlands), 35% (Spain) and 71% (Italy) of patients as physically/emotionally overburdened (P <0.001). For 8% (Spain), 14% (Belgium), 36% (The Netherlands) and 43% (Italy) patients, GPs reported difficulties in covering care-related costs (P <0.001). Patients

Original languageEnglish
Pages (from-to)819-826
Number of pages8
JournalEuropean Journal of Public Health
Issue number5
Publication statusPublished - Oct 1 2013

ASJC Scopus subject areas

  • Public Health, Environmental and Occupational Health
  • Medicine(all)


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