Reporting Down syndrome on the death certificate for Alzheimer disease/unspecified dementia deaths.

Reporting Down syndrome on the death certificate for Alzheimer disease/unspecified dementia deaths.
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DOI:
10.1371/journal.pone.0281763
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发表时间:
2023
期刊:
影响因子:
3.7
通讯作者:
--
中科院分区:
综合性期刊3区
文献类型:
--
作者:

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死亡证明对于了解人口健康趋势,包括疾病死亡率的负担至关重要。为了执行适当的公共卫生政策和资助疾病研究,在这些记录上准确报告死因是必要的。虽然有证据表明阿尔茨海默病和不明原因痴呆症在唐氏综合症患者中很常见,但2014年疾病控制和预防中心(CDC)的一项规则改变,指示在死于阿尔茨海默病或不明原因痴呆症的情况下,唐氏综合症应被报告为潜在的死亡原因,这威胁到了这一人群死亡证明的准确性和实用性。这项研究使用了15年(2005-2019年)美国唐氏综合症患者和非唐氏综合症患者的死亡证明数据。我们比较了修改唐氏综合症作为潜在死因的死亡证明前后阿尔茨海默病和不明原因痴呆造成的死亡负担。在分析死亡证明时,如果不考虑唐氏综合症作为基本死因的报告,阿尔茨海默病和痴呆症的死亡率在患有和不患有唐氏综合症的成年人中都是第三大死因。在修改了将唐氏综合症报告为潜在死亡原因的死亡证明后,阿尔茨海默病和痴呆症是唐氏综合症患者的主要死亡原因,患有唐氏综合症的成年人的发病率是没有唐氏综合症的成年人的2.7倍。这项研究的结果突出了准确的死亡率数据对于研究和处理人口健康趋势的重要性。目前将唐氏综合症报告为死亡的根本原因而不是造成死亡的疾病的做法需要重新考虑和修改。如果没有,唐氏综合症患者可能会在痴呆症相关支持和研究中进一步被边缘化。
Death certificates are crucial for understanding population health trends including the burden of disease mortality. Accurate reporting of causes of death on these records is necessary in order to implement adequate public health policies and fund disease research. While there is evidence that Alzheimer disease and unspecified dementia are prevalent among people with Down syndrome, a 2014 Centers for Disease Control and Prevention (CDC) rule change instructing that Down syndrome should be reported as the underlying cause of death in instances when death occurred from Alzheimer disease or unspecified dementia threatens the accuracy and the utility of death certificates for this population. This study used 15 years (2005–2019) of US death certificate data for adults with and without Down syndrome. We compare the mortality burden due to Alzheimer disease and unspecified dementia prior to and after amending death certificates that report Down syndrome as the underlying cause of death. When analyzing death certificates without addressing the reporting of Down syndrome as the underlying cause of death, rates of death due to Alzheimer disease and dementia ranked as the third leading cause of death for both adults with and without Down syndrome. After amending death certificates that reported Down syndrome as the underlying cause of death, Alzheimer disease and dementia were the leading cause of death among those with Down syndrome, occurring 2.7 times more in adults with compared to without Down syndrome. The findings of this study highlight the importance of accurate mortality data for studying and addressing population health trends. The current practice of reporting Down syndrome as the underlying cause of death rather than the disease responsible for death needs to be reconsidered and modified. If not, people with Down syndrome may be further marginalized within dementia related support and research.
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