Pivodic Lara, Van den Block Lieve, Pardon Koen, Miccinesi Guido, Vega Alonso Tomás, Boffin Nicole, Donker Gé A, Cancian Maurizio, López-Maside Aurora, Onwuteaka-Philipsen Bregje D, Deliens Luc
1 End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) and Ghent University, Brussels, Belgium
1 End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) and Ghent University, Brussels, Belgium.
Eur J Public Health. 2014 Oct;24(5):819-26. doi: 10.1093/eurpub/cku026. Epub 2014 Mar 17.
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.
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.
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.
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.
癌症及其他危及生命疾病导致的死亡人数不断上升，与此同时，提供长期护理（包括临终护理）的家庭护理人员数量也在增加。这项基于人群的流行病学研究旨在描述和比较四个欧洲国家临终患者家庭护理人员身体或情感负担过重以及支付护理相关费用困难的患病率及其相关因素。
通过全国具有代表性的全科医生（GP）哨点网络开展一项跨国回顾性研究。比利时、荷兰、意大利和西班牙的全科医生使用标准化表格记录了每位已故成年执业患者（2009年1月1日至2010年12月31日）生命最后3个月的信息。猝死情况被排除。
我们研究了4466例死亡病例。全科医生判断，比利时28%、荷兰30%、西班牙35%和意大利71%的患者家庭护理人员存在身体/情感负担过重的情况（P<0.001）。对于8%（西班牙）、之4%（比利时）、36%（荷兰）和43%（意大利）的患者，全科医生报告称在支付护理相关费用方面存在困难（P<0.001）。85岁以下患者（比利时、意大利）的家庭护理人员身体/情感负担过重及经济负担的几率更高。非恶性疾病导致的死亡（与癌症相比）（比利时和意大利）以及在家中死亡（与其他地点相比）（荷兰和意大利）与支付护理相关费用困难的几率更高有关。
在所研究的所有国家，尤其是意大利，全科医生观察到临终患者家庭护理人员存在相当程度的身体/情感负担过重以及支付护理相关费用困难的情况。文中讨论了对卫生和社会护理政策的影响。
