title: Burden on family carers and care-related financial strain at the end of life: a cross-national population-based study.
abstract: 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 <85 years of age (Belgium, Italy) had higher odds of having physically/emotionally overburdened family carers and financial burden. Death from non-malignant illness (vs. cancer) (Belgium and Italy) and dying at home compared with other locations (The Netherlands and Italy) were associated with higher odds of difficulties in covering care-related costs.
  
  
  CONCLUSIONS
  In all countries studied, and particularly in Italy, GPs observed a considerable extent of physical/emotional overburden as well as difficulties in covering care-related costs among family carers of people at the end of life. Implications for health- and social care policies are discussed.
authors.affiliation: 1 End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) and Ghent University, Brussels, Belgium lara.pivodic@vub.ac.be.
authors.forename: Lara
authors.initials: L
authors.lastname: Pivodic
authors.affiliation: 1 End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) and Ghent University, Brussels, Belgium.
authors.forename: Lieve
authors.initials: L
authors.lastname: Van den Block
authors.affiliation: 1 End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) and Ghent University, Brussels, Belgium.
authors.forename: Koen
authors.initials: K
authors.lastname: Pardon
authors.affiliation: 2 Cancer Prevention and Research Institute (ISPO), Florence, Italy.
authors.forename: Guido
authors.initials: G
authors.lastname: Miccinesi
authors.affiliation: 3 Public Health Directorate, Ministry of Health, Autonomous Community of Castile and Leon, Valladolid, Spain.
authors.forename: Tomás
authors.initials: T
authors.lastname: Vega Alonso
authors.affiliation: 4 Scientific Institute of Public Health, Brussels, Belgium.
authors.forename: Nicole
authors.initials: N
authors.lastname: Boffin
authors.affiliation: 5 NIVEL, Netherlands Institute for Health Services Research, Utrecht, The Netherlands.
authors.forename: Gé A
authors.initials: GA
authors.lastname: Donker
authors.affiliation: 6 SIMG, Italian College of General Practitioners, Florence, Italy.
authors.forename: Maurizio
authors.initials: M
authors.lastname: Cancian
authors.affiliation: 7 Public Health General Directorate, Health Department, Valencian Community, Valencia, Spain.
authors.forename: Aurora
authors.initials: A
authors.lastname: López-Maside
authors.affiliation: 8 Department of Public and Occupational Health, EMGO+ Institute for Health and Care Research, VU University Medical Center, Amsterdam, The Netherlands.
authors.forename: Bregje D
authors.initials: BD
authors.lastname: Onwuteaka-Philipsen
authors.affiliation: 1 End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) and Ghent University, Brussels, Belgium 8 Department of Public and Occupational Health, EMGO+ Institute for Health and Care Research, VU University Medical Center, Amsterdam, The Netherlands.
authors.forename: Luc
authors.initials: L
authors.lastname: Deliens
mesh_terms: D000061:Accidents, Home / Q000191:economics / Q000523:psychology / Q000706:statistics & numerical data; D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001530:Belgium / Q000453:epidemiology; D017028:Caregivers / Q000191:economics / Q000523:psychology / Q000706:statistics & numerical data*; D017281:Cost of Illness; D005190:Family / Q000523:psychology; D005260:Female; D058005:General Practitioners; D019538:Health Care Surveys / Q000379:methods / Q000706:statistics & numerical data; D006801:Humans; D007558:Italy / Q000453:epidemiology; D008297:Male; D008875:Middle Aged; D009426:Netherlands / Q000453:epidemiology; D012189:Retrospective Studies; D013030:Spain / Q000453:epidemiology; D013312:Stress, Physiological; D013315:Stress, Psychological / Q000453:epidemiology* / Q000523:psychology; D013727:Terminal Care / Q000191:economics* / Q000379:methods / Q000523:psychology*; D055815:Young Adult