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Avoidable Mortality in Adults With Down Syndrome or With Other Intellectual Disabilities
Bokor L, Yu MKL, Carter B, Chauhan U, Sheehan R, Strydom A.. JAMA network open, 2026-11-02
Topic: Risk, prevention and care in population studies
Objective To compare the proportion and causes of avoidable mortality in adults with Down syndrome, adults with other intellectual disabilities, and the general population, and to identify factors associated with avoidable death. Factors associated with avoidable death and age at death were also evaluated. Results Among 3381 adults with Down syndrome (1892 male [56.0%]; median [IQR] age at death, 59.5 [54.3-64.2] years), 1589 (47.0%) died from avoidable causes. Down syndrome was independently associated with higher odds of avoidable death (aOR, 1.15; 95% CI, 1.06-1.25) and earlier age at avoidable death (aHR, 1.49; 95% CI, 1.40-1.58). Minoritized ethnic background, asthma, diabetes, and osteoporosis were each independently associated with higher odds of avoidable death, and minoritized ethnic background and greater socioeconomic deprivation with earlier age at avoidable death. These findings support proactive integrated neurological care, including epilepsy review with dementia monitoring, pneumonia prevention, and respiratory vaccination, alongside targeted interventions for minoritized ethnic groups and socioeconomically deprived groups.
Cite this study APA, Vancouver, BibTeX · download .bib or .ris
APA 7th
Bokor, L., Yu, M. K. L., Carter, B., Chauhan, U., Sheehan, R., & Strydom, A. (2026). Avoidable Mortality in Adults With Down Syndrome or With Other Intellectual Disabilities. JAMA network open. https://doi.org/10.1001/jamanetworkopen.2026.43229
Vancouver
Bokor L, Yu MKL, Carter B, Chauhan U, Sheehan R, Strydom A. Avoidable Mortality in Adults With Down Syndrome or With Other Intellectual Disabilities. JAMA network open. 2026. doi:10.1001/jamanetworkopen.2026.43229. PMID: 43013309.
BibTeX
@article{bokor2026-43013309,
author = {Bokor, L. and Yu, M. K. L. and Carter, B. and Chauhan, U. and Sheehan, R. and Strydom, A.},
title = {{Avoidable Mortality in Adults With Down Syndrome or With Other Intellectual Disabilities}},
journal = {JAMA network open},
year = {2026},
doi = {10.1001/jamanetworkopen.2026.43229},
pmid = {43013309},
url = {https://doi.org/10.1001/jamanetworkopen.2026.43229}
}
Built from the record alzhub holds for this paper, not looked up. Volume, issue and page numbers are not held in the record. Check the citation against the original before you use it.
Key findings
- Objective To compare the proportion and causes of avoidable mortality in adults with Down syndrome, adults with other intellectual disabilities, and the general population, and to identify factors associated with avoidable death.
- Factors associated with avoidable death and age at death were also evaluated.
- Results Among 3381 adults with Down syndrome (1892 male [56.0%]; median [IQR] age at death, 59.5 [54.3-64.2] years), 1589 (47.0%) died from avoidable causes.
- Down syndrome was independently associated with higher odds of avoidable death (aOR, 1.15; 95% CI, 1.06-1.25) and earlier age at avoidable death (aHR, 1.49; 95% CI, 1.40-1.58).
- Minoritized ethnic background, asthma, diabetes, and osteoporosis were each independently associated with higher odds of avoidable death, and minoritized ethnic background and greater socioeconomic deprivation with earlier age at avoidable death.
Study details
- Study designcohort study
- Participants3,381
- Effect size56.0%; 47.0%; 56.5%
- Evidence strengthModerate
How this study scored 76/100
Published in a leading specialty journal, and it is a cohort study following people over time. Scored zero for randomised / blinded because the record does not state it. We have no data on journal's citation record, times cited, citations per year, impact for its field and year, cited by studies here, still being cited, senior author's track record, institution's track record and multi-centre collaboration, so those were left out: it earned 44 of the 58 points we could judge it on, which is 76 out of 100.
| Component | Points | Why |
|---|---|---|
| Journal tier | 9 / 10 | Tier 2 — leading specialty journal (JAMA network open) |
| Journal's citation record | — / 4 | No journal record from OpenAlex — left out of this score |
| Study design | 7 / 12 | A cohort study following people over time |
| Strength of evidence | 3 / 5 | Rated “moderate” in our summary |
| Peer-review validation | 10 / 10 | Peer-reviewed. Published as an article in a named peer-reviewed journal. |
| How recent | 5 / 5 | 2026 — within 1 year(s) of the newest study here |
| Sample size | 3 / 4 | 3,381 participants |
| Effect reported | 2 / 3 | Effect reported as a number, without an interval or test |
| Studied in people | 3 / 3 | Studied in people (participant count stated) |
| Randomised / blinded | 0 / 2 | No randomisation or blinding stated — scores zero (not stated in the record — scored 0) |
| Times cited | — / 7 | No citation count (not found in OpenAlex) — left out of this score |
| Citations per year | — / 5 | No citation count or no year — left out of this score |
| Impact for its field and year | — / 6 | No field-weighted citation impact (OpenAlex has none yet) — left out of this score |
| Cited by studies here | — / 6 | Not yet checked against this library's citation graph — left out of this score |
| Still being cited | — / 4 | No yearly citation counts — left out of this score |
| Senior author's track record | — / 4 | Senior author's record not available — left out of this score |
| Institution's track record | — / 3 | No institution listed in OpenAlex — left out of this score |
| Multi-centre collaboration | — / 3 | Institutions not listed — left out of this score |
| Indexed in PubMed | 2 / 2 | Indexed in PubMed (PMID 43013309) |
| Free to read | 0 / 2 | Behind a paywall — scores zero |
| Points | 44 / 58 | Scored on 11 of 20 parts. We have no data for the rest, so they are left out: 44 of the 58 points we could judge it on is 76 out of 100. |
| Total | 76 / 100 | — |
What each of these 20 components measures, and what this score is not →
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