Alzheimer Dementia Among Individuals With Down Syndrome
Rubenstein, Eric (Boston University School of Public Health)
Tewolde, Salina (Boston University School of Public Health)
Michals, Amy (Boston University School of Public Health)
Weuve, Jennifer (Boston University School of Public Health)
Fortea, Juan (Institut de Recerca Sant Pau)
Fox, Matthew P. (Boston University School of Public Health)
Pescador Jimenez, Marcia (Boston University School of Public Health)
Scott, Ashley (Boston University School of Public Health)
Tripodis, Yorghos (Boston University School of Public Health)
Skotko, Brian G. (Massachusetts General Hospital (Boston, Estats Units d'Amèrica))
Universitat Autònoma de Barcelona

Data:	2024
Resum:	What is the incidence and prevalence of Alzheimer dementia in patients with Down syndrome using data from the US Medicare and Medicaid? In this cohort study of 132 720 adults with Down syndrome enrolled in Medicaid or Medicare between 2011 to 2019, 23. 3% of adults had Alzheimer dementia diagnoses, and the mean age of death was 59. 2 years. These findings suggest that Alzheimer dementia is almost universal among people with Down syndrome, and administrative claims data may offer valuable insights into improving care for this diverse population. This cohort study examines the prevalence and incidence of Alzheimer disease among individuals with Down syndrome using US Medicare and Medicaid claims data. With the advancement in administrative data as a research tool and the reliance on public health insurance for individuals with Down syndrome, population-level trends in Alzheimer dementia in this population are beginning to be understood. To comprehensively describe the epidemiology of Alzheimer dementia in adults with Down syndrome in a full US Medicare and Medicaid sample. This cohort study included 132 720 adults aged 18 years or older with Medicaid and/or Medicare claims data with an International Statistical Classification of Diseases and Related Health Problems code for Down syndrome. Data were collected from January 1, 2011, to December 31, 2019, and analyzed from August 2023 to May 2024. The main outcome was prevalence of Alzheimer dementia in each calendar year and during the 9-year period. Alzheimer dementia incidence rates by calendar year and age and stratified for race or ethnicity as well as time to death after Alzheimer dementia diagnosis were also assessed. There were 132 720 unique adults with Down syndrome from 2011 to 2019: 79 578 (53. 2%) were male, 17 090 (11. 7%) were non-Hispanic Black, 20 777 (15. 7%) were Hispanic, 101 120 (68. 8%) were non-Hispanic White, and 47 692 (23. 3%) had ever had an Alzheimer dementia diagnosis. Incidence was 22. 4 cases per 1000 person-years. The probability of an incident Alzheimer dementia diagnosis over 8 years was 0. 63 (95% CI, 0. 62-0. 64) for those entering the study between ages 55 to 64 years. Mean (SD) age at incident diagnosis was 54. 5 (7. 4) years and median (IQR) age was 54. 6 (9. 3) years. Mean (SD) age at death among those with Alzheimer dementia was 59. 2 (6. 9) years (median [IQR], 59. 0 [8. 0] years). The mean (SD) age at onset for the Hispanic group was 54. 2 (9. 2) years, 52. 4 (7. 8) years for the American Indian or Alaska Native group, and 52. 8 (8. 2) years for the mixed race groups compared with 55. 0 (7. 8) years for the White non-Hispanic group. For age at death, there were no differences by sex. The mean (SD) age at death was later for the White non-Hispanic group (59. 3 [6. 8] years) compared with the Hispanic group (58. 5 [7. 8] years), Native American group (57. 8 [7. 1] years), and mixed race group (58. 2 [7. 0] years). In this cohort study of adults with Down syndrome who were enrolled in Medicaid and Medicare, Alzheimer dementia occurred at high rates. Consistency with clinical studies of dementia in Down syndrome supports the use of administrative data in Down syndrome-Alzheimer dementia research.
Ajuts:	Instituto de Salud Carlos III PI20/01473 Agència de Gestió d'Ajuts Universitaris i de Recerca SLT006/17/00119 European Commission 948677
Drets:	Aquest document està subjecte a una llicència d'ús Creative Commons. Es permet la reproducció total o parcial, la distribució, la comunicació pública de l'obra i la creació d'obres derivades, fins i tot amb finalitats comercials, sempre i quan es reconegui l'autoria de l'obra original.
Llengua:	Anglès
Document:	Article ; recerca ; Versió publicada
Publicat a:	JAMA network open, Vol. 7 (september 2024) , ISSN 2574-3805

DOI: 10.1001/jamanetworkopen.2024.35018
PMID: 39312235

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