ArticleBMJ open2019
Obscuring effect of coding developmental disability as the underlying cause of death on mortality trends for adults with developmental disability: a cross-sectional study using US Mortality Data from 2012 to 2016.
Article in BMJ open, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 22 papers.
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Who cites it
22 citing papers in PubMed, 41 citations in OpenAlex.
- Type 2 Diabetes-Related Avoidable Mortality Risk Among Individuals with Developmental Disabilities: A Comparison With Individuals With Other Disabilities and Those Without Disabilities : T2DM-Related Avoidable Mortality among Developmentally Disabled Individuals.Journal of autism and developmental disorders · 2025Article
- Down syndrome in Africa: Challenges, opportunities, and future directions.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2025Article
- Article
- Reporting Down syndrome on the death certificate for Alzheimer disease/unspecified dementia deaths.PloS one · 2023Article
- Postmortem Diagnostic Overshadowing: Reporting Cerebral Palsy on Death Certificates.Journal of health and social behavior · 2022Article
- Underlying Causes of Death among Adults with Cerebral Palsy.Journal of clinical medicine · 2022Article
- Wrongful Birth: AI-Tools for Moral Decisions in Clinical Care in the Absence of Disability Ethics.The American journal of bioethics : AJOB · 2022Article
- Factors associated with the reporting of Down syndrome as the underlying cause of death on US death certificates.Journal of intellectual disability research : JIDR · 2022Article
- Cancer in deceased adults with intellectual disabilities: English population-based study using linked data from three sources.BMJ open · 2022Article
- Cause of death trends among adults with and without cerebral palsy in the United States, 2013-2017.Annals of physical and rehabilitation medicine · 2022Article
- Assessing state level variation in signature authority and cause of death accuracy, 2005-2017.Preventive medicine reports · 2021Article
- Article
- Cause of death in adults with intellectual disability in the United States.Journal of intellectual disability research : JIDR · 2021Article
- Recommendations for Accurately Reporting Intellectual and Developmental Disabilities on Death Certificates.American journal of preventive medicine · 2020Article
- Cause of death in adults with Down syndrome in the United States.Disability and health journal · 2020Article
- Article
- Alzheimer's Disease in Down Syndrome: Progress in the Design and Conduct of Drug Prevention Trials.CNS drugs · 2020Review
- The public health response to the COVID-19 pandemic for people with disabilities.Disability and health journal · 2020Article
- People With Disabilities in COVID-19: Fixing Our Priorities.The American journal of bioethics : AJOB · 2020Article
- Further understanding the connection between Alzheimer's disease and Down syndrome.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2020Review
Corrections and comments
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Authors and funding
3 authors at 2 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectiveTo determine whether coding a developmental disability as the underlying cause of death obscures mortality trends of adults with developmental disability.
designNational Vital Statistics System 2012-2016 US Multiple Cause-of-Death Mortality files.
settingUSA.
participantsAdults with a developmental disability indicated on their death certificate aged 18 through 103 at the time of death. The study population included 33 154 adults who died between 1 January 2012 and 31 December 2016. PRIMARY OUTCOME AND MEASURES: Decedents with a developmental disability coded as the underlying cause of death on the death certificate were identified using the International Statistical Classification of Diseases and Related Health Problems, Tenth Revision code for intellectual disability, cerebral palsy, Down syndrome or other developmental disability. Death certificates that coded a developmental disability as the underlying cause of death were revised using a sequential underlying cause of death revision process.
resultsThere were 33 154 decedents with developmental disability: 7901 with intellectual disability, 11 895 with cerebral palsy, 9114 with Down syndrome, 2479 with other developmental disabilities and 1765 with multiple developmental disabilities. Among all decedents, 48.5% had a developmental disability coded as the underlying cause of death, obscuring higher rates of choking deaths among all decedents and dementia and Alzheimer's disease among decedents with Down syndrome.
conclusionDeath certificates that recorded the developmental disability in Part I of the death certificate were more likely to code disability as the underlying cause of death. While revising these death certificates provides a short-term corrective to mortality trends for this population, the severity and extent of this problem warrants a long-term change involving more precise instructions to record developmental disabilities only in Part II of the death certificate.
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