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Reporting Down syndrome on the death certificate for Alzheimer disease/unspecified dementia deaths
Landes SD, Finan JM, Turk MA.. PloS one, 2023-02-13
Topic: Risk, prevention and care in population studies
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.
Cite this study APA, Vancouver, BibTeX · download .bib or .ris
APA 7th
Landes, S. D., Finan, J. M., & Turk, M. A. (2023). Reporting Down syndrome on the death certificate for Alzheimer disease/unspecified dementia deaths. PloS one. https://doi.org/10.1371/journal.pone.0281763
Vancouver
Landes SD, Finan JM, Turk MA. Reporting Down syndrome on the death certificate for Alzheimer disease/unspecified dementia deaths. PloS one. 2023. doi:10.1371/journal.pone.0281763. PMID: 36780546.
BibTeX
@article{landes2023-36780546,
author = {Landes, S. D. and Finan, J. M. and Turk, M. A.},
title = {{Reporting Down syndrome on the death certificate for Alzheimer disease/unspecified dementia deaths}},
journal = {PloS one},
year = {2023},
doi = {10.1371/journal.pone.0281763},
pmid = {36780546},
url = {https://doi.org/10.1371/journal.pone.0281763}
}
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Key findings
- 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.
Why it matters
This analysis of 15 years of US death certificate data found that when Down syndrome was reported as the underlying cause of death, Alzheimer's disease and dementia deaths were hidden; after amending those certificates, Alzheimer's disease and dementia became the leading cause of death among adults with Down syndrome. The findings concern how deaths are recorded and counted, not how Alzheimer's disease is treated or prevented.
Study details
- Evidence strengthLow
How this study scored 40/100
Published in a peer-reviewed journal. Scored zero for study design, sample size, effect reported, studied in people and randomised / blinded because the record does not state it.
| Component | Points | Why |
|---|---|---|
| Journal tier | 7 / 10 | Tier 3 — peer-reviewed journal (PloS one) |
| Journal's citation record | 4 / 4 | PLoS ONE: journal h-index 594 (OpenAlex, 2026-10-29) |
| Study design | 0 / 12 | No study design recorded — scores zero, not guessed (not stated in the record — scored 0) |
| Strength of evidence | 1 / 5 | Rated “low” in our summary |
| Peer-review validation | 10 / 10 | Peer-reviewed. Published as an article in a named peer-reviewed journal. |
| How recent | 3 / 5 | 2023 — within 6 year(s) of the newest study here |
| Sample size | 0 / 4 | Participant count not stated — scores zero (not stated in the record — scored 0) |
| Effect reported | 0 / 3 | No effect size reported — scores zero (not stated in the record — scored 0) |
| Studied in people | 0 / 3 | Not stated whether this was studied in people — scores zero (not stated in the record — scored 0) |
| Randomised / blinded | 0 / 2 | No randomisation or blinding stated — scores zero (not stated in the record — scored 0) |
| Times cited | 2 / 7 | Cited 7 times (OpenAlex, 2026-10-10) |
| Citations per year | 1 / 5 | 1.4 citations a year over 5 year(s) since 2023 |
| Impact for its field and year | 2 / 6 | Cited 1.6× the average for papers of its field and year (OpenAlex FWCI) |
| Cited by studies here | 1 / 6 | Cited by 1 other studies in this library |
| Still being cited | 1 / 4 | Cited 5 times in 2024–2026 (2026 still in progress; OpenAlex) |
| Senior author's track record | 2 / 4 | Last-listed author Margaret A. Turk: h-index 24 (OpenAlex, whole career) |
| Institution's track record | 1 / 3 | Syracuse University: institution h-index 820 (OpenAlex) |
| Multi-centre collaboration | 1 / 3 | OpenAlex lists 2 institution(s) in 1 country |
| Indexed in PubMed | 2 / 2 | Indexed in PubMed (PMID 36780546) |
| Free to read | 2 / 2 | Free to read |
| Total | 40 / 100 | — |
What each of these 20 components measures, and what this score is not →
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