https://immattersacp.org/weekly/archives/2020/10/27/2.htm

Guideline released on adults with Down syndrome, while study looks at COVID-19 risk

A recent clinical guideline calls for screening patients with Down syndrome for Alzheimer-type dementia starting at age 40 years and diabetes starting at age 30 years. Down syndrome is also associated with high risk for death from COVID-19, a new study found.


A workgroup developed a new clinical guideline on care, including health screening, for adults with Down syndrome.

The guideline, which was developed by the Global Down Syndrome Foundation Medical Care Guidelines for Adults with Down Syndrome Workgroup, addresses mental health, dementia, screening or treatment of diabetes, cardiovascular disease, obesity, osteoporosis, atlantoaxial instability, thyroid disease, and celiac disease.

The authors considered 22 studies, three systematic reviews, and 19 primary studies to develop 14 recommendations and four statements of good practice. Overall, the evidence base was limited. The guideline was published Oct. 20 by JAMA.

The only strong recommendation was to screen for Alzheimer-type dementia starting at age 40 years because rates of dementia increase from approximately 10% to 20% among those ages 45 to 50 years to as high as 50% in those ages 55 to 59 years. Age 40 years was chosen because dementia prevalence is less than 1% in those younger than 40, so starting screening at this age lets physicians establish a baseline, the guideline said.

Four recommendations—managing risk factors for cardiovascular disease, preventing strokes, screening for obesity, and evaluating for secondary causes of osteoporosis—agreed with existing guidance for individuals without Down syndrome. The recommendations on diabetes screening call for earlier and more frequent screening: every three years beginning at age 30 years in asymptomatic patients or every two to three years beginning at age 21 years in those with obesity.

An accompanying editorial noted barriers to implementation of the guideline by primary care physicians: limited adherence to U.S. Preventive Services Task Force recommendations due to clinician knowledge, time, reimbursement, and social barriers; handoffs from pediatric clinicians to adult care; guideline distribution and education; and limited time during annual preventive health visits.

“Ideally, adults with Down syndrome may seek care from specialized centers for adults with Down syndrome or intellectual disabilities,” the editorial said. “Those who lack access to these services will depend on coordinated transfer of care from pediatric to adult clinicians.”

Separately, a brief research report published by Annals of Internal Medicine on Oct. 21 found that Down syndrome was associated with higher risk for death from COVID-19 in a cohort study of 8.26 million adults in the United Kingdom as part of a wider, government-commissioned COVID-19 risk prediction project.

Adjusted for age and sex, the hazard ratio (HR) for COVID-19-related death in adults with Down syndrome was 24.94 (95% CI, 17.08 to 36.44). After adjustment for age, sex, ethnicity, body mass index, dementia, care home residency, congenital heart disease, and other comorbid conditions and treatments, the HR for COVID-19-related death was 10.39 (95% CI, 7.08 to 15.23); the HR for hospitalization was 4.94 (95% CI, 3.63 to 6.73). The authors noted that this was a high risk among “a group that is currently not strategically protected.”