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

Autor: Landes SD; Department of Sociology and Aging Studies Institute, Maxwell School of Citizenship and Public Affairs, Syracuse University, Syracuse, NY, United States of America., Finan JM; Department of Sociology and Aging Studies Institute, Maxwell School of Citizenship and Public Affairs, Syracuse University, Syracuse, NY, United States of America., Turk MA; Department of Physical Medicine & Rehabilitation, SUNY Upstate Medical University, Syracuse, NY, United States of America.
Jazyk: angličtina
Zdroj: PloS one [PLoS One] 2023 Feb 13; Vol. 18 (2), pp. e0281763. Date of Electronic Publication: 2023 Feb 13 (Print Publication: 2023).
DOI: 10.1371/journal.pone.0281763
Abstrakt: 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.
Competing Interests: The authors have declared that no competing interests exist.
(Copyright: © 2023 Landes et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.)
Databáze: MEDLINE
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