在阿尔茨海默病/未特指痴呆病死亡的死亡证明上报告唐氏综合征。
Reporting Down syndrome on the death certificate for Alzheimer disease/unspecified dementia deaths.
机构信息
Department of Sociology and Aging Studies Institute, Maxwell School of Citizenship and Public Affairs, Syracuse University, Syracuse, NY, United States of America.
Department of Physical Medicine & Rehabilitation, SUNY Upstate Medical University, Syracuse, NY, United States of America.
出版信息
PLoS One. 2023 Feb 13;18(2):e0281763. doi: 10.1371/journal.pone.0281763. eCollection 2023.
BACKGROUND
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.
METHODS
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.
RESULTS
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.
CONCLUSION
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.
背景
死亡证明对于了解包括疾病死亡率在内的人口健康趋势至关重要。为了实施适当的公共卫生政策和为疾病研究提供资金，这些记录中死因的准确报告是必要的。虽然有证据表明阿尔茨海默病和未特指的痴呆症在唐氏综合征患者中很常见，但 2014 年疾病控制与预防中心（CDC）的一项规则变更规定，在因阿尔茨海默病或未特指的痴呆症导致死亡的情况下，唐氏综合征应报告为根本死因，这威胁到这些人群的死亡证明的准确性和实用性。
方法
本研究使用了 15 年（2005-2019 年）美国有和没有唐氏综合征的成年人的死亡证明数据。我们比较了在修改将唐氏综合征报告为根本死因的死亡证明之前和之后，因阿尔茨海默病和未特指的痴呆症导致的死亡率负担。
结果
在不解决将唐氏综合征报告为根本死因的情况下分析死亡证明时，因阿尔茨海默病和痴呆症导致的死亡率在有和没有唐氏综合征的成年人中均排名第三。在修改了将唐氏综合征报告为根本死因的死亡证明后，阿尔茨海默病和痴呆症成为唐氏综合征患者的主要死因，唐氏综合征患者的死亡率是没有唐氏综合征患者的 2.7 倍。
结论
本研究的结果强调了准确的死亡率数据对于研究和应对人口健康趋势的重要性。目前将唐氏综合征报告为根本死因而不是导致死亡的疾病的做法需要重新考虑和修改。如果不这样做，唐氏综合征患者可能会在与痴呆症相关的支持和研究中进一步被边缘化。
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