In First, Doctors Get Guidelines For Treating Adults With Down Syndrome
New guidelines are spelling out exactly how medical care for adults with Down syndrome should be distinct from that of their typically-developing peers.
Experts from eight of the nation’s largest adult Down syndrome medical centers and other stakeholders spent four years combing research on the treatment of those with the chromosomal disorder in order to establish the first-of-its-kind evidence-based clinical guidelines.
The team focused on how Down syndrome intersected with treatment of mental health, dementia, diabetes, cardiovascular disease, obesity, osteoporosis, atlantoaxial instability, thyroid disease and celiac disease.
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The result is a paper with 14 recommendations and four statements of good practice for clinicians treating those with Down syndrome that is published in the Journal of the American Medical Association.
Estimates show that about 206,000 Americans have Down syndrome — which is known to bring higher risk of congenital cardiac issues, autoimmune diseases, Alzheimer’s disease and other health concerns — and they are living longer than ever before.
Nonetheless, the panel behind the report found that “overall, the evidence base was limited.” In fact, there was no clinical research in several of the areas addressed by the guidelines, leaving the experts to make recommendations based on their experience.
The strongest recommendation is for all people with Down syndrome to be screened for Alzheimer’s disease starting at age 40.
Two recommendations urge earlier and more frequent diabetes screening for those with the chromosomal disorder. Meanwhile, four other recommendations — managing risk factors for cardiovascular disease and stroke prevention, screening for obesity and evaluation for secondary causes of osteoporosis — paralleled guidance that’s already in place for people without Down syndrome.
“We are so pleased that the quality of our guideline rose to the occasion of being published in JAMA, and we are deeply grateful to our families and self-advocates for pushing us to work on this difficult project,” says Michelle Sie Whitten, president and CEO of the Global Down Syndrome Foundation, or GLOBAL, which spearheaded the effort. “Now we can focus on collaborating with other Down syndrome and disability organizations as well as medical institutions to ensure clinicians are following our Global Guideline and measuring outcomes.”