Cohen Joachim, Bilsen Johan, Miccinesi Guido, Löfmark Rurik, Addington-Hall Julia, Kaasa Stein, Norup Michael, van der Wal Gerrit, Deliens Luc
End-of-Life Care Research Group, Vrije Universiteit Brussel, Brussels, Belgium.
BMC Public Health. 2007 Oct 8;7:283. doi: 10.1186/1471-2458-7-283.
Systematic and reliable epidemiological information at population level, preferably cross-national, is needed for an adequate planning of (end-of-life) health care policies, e.g. concerning place of death, but is currently lacking. This study illustrates opportunities and weaknesses of death certificate data to provide such information on place of death and associated factors in nine European countries (seven entire countries and five regions).
We investigated the possibility and modality of all partners in this international comparative study (BE, DK, IT, NL, NO, SE, UK) to negotiate a dataset containing all deaths of one year with their national/regional administration of mortality statistics, and analysed the availability of information about place of death as well as a number of clinical, socio-demographic, residential and healthcare system factors.
All countries negotiated a dataset, but rules, procedures, and cost price to get the data varied strongly between countries. In total, about 1.1 million deaths were included. For four of the nine countries not all desired categories for place of death were available. Most desired clinical and socio-demographic information was available, be it sometimes via linkages with other population databases. Healthcare system factors could be made available by linking existing healthcare statistics to the residence of the deceased.
Death certificate data provide information on place of death and on possibly associated factors and confounders in all studied countries. Hence, death certificate data provide a unique opportunity for cross-national studying and monitoring of place of death. However, modifications of certain aspects of death certificate registration and rules of data-protection are perhaps required to make international monitoring of place of death more feasible and accurate.
为了合理规划(临终)医疗保健政策,例如关于死亡地点的政策,需要在人群层面获得系统且可靠的流行病学信息,最好是跨国信息,但目前此类信息尚缺。本研究阐述了死亡证明数据在九个欧洲国家(七个完整国家和五个地区)提供死亡地点及相关因素信息方面的机遇与不足。
我们在这项国际比较研究(比利时、丹麦、意大利、荷兰、挪威、瑞典、英国)中,调查了所有合作伙伴与各自国家/地区死亡率统计管理部门协商获取包含某一年所有死亡信息数据集的可能性及方式,并分析了死亡地点信息以及一些临床、社会人口统计学、居住和医疗保健系统因素的可得性。
所有国家都协商出了一个数据集,但各国获取数据的规则、程序和成本差异很大。总共纳入了约110万例死亡病例。九个国家中有四个国家无法获取所有期望的死亡地点类别信息。大多数期望的临床和社会人口统计学信息是可得的,不过有时需要通过与其他人口数据库建立关联来获取。通过将现有的医疗保健统计数据与死者居住地相联系,可以获取医疗保健系统因素信息。
死亡证明数据在所有研究国家中都提供了关于死亡地点以及可能相关因素和混杂因素的信息。因此,死亡证明数据为跨国研究和监测死亡地点提供了独特的机会。然而,可能需要对死亡证明登记的某些方面和数据保护规则进行修改,以使对死亡地点的国际监测更加可行和准确。