New guide provides adults with Down syndrome with a roadmap to care

Marilyn Long, left, helps her brother, Jeff Malanoski, who has Down syndrome and Alzheimer’s disease, at their home in Elk Grove Village, Illinois in 2014. (Chris Walker/Chicago Tribune/TNS)

As people with Down syndrome live longer than ever, a newly released guide offers families never-before-seen advice on how the chromosomal disorder should impact their medical care.

The resource published this summer by the Global Down Syndrome Foundation builds on recommendations for clinicians that were published in the Journal of the American Medical Association in October 2020, the result of a multi-year research review.

This document, developed by experts from eight of the nation’s largest adult Down syndrome medical centers and other stakeholders, includes more than 80 pages of technical advice on behavior management, dementia, diabetes, cardiovascular diseases, obesity, osteoporosis, atlanto-axial instability, thyroid and celiac diseases. sickness.

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Among other things, the recommendations urge all people with Down syndrome to get screened for Alzheimer’s disease from the age of 40 and state that people in this population should be screened for diabetes earlier and more often than others.

Most advice to doctors was new because there was no clinical research available in many areas.

Now at a quarter of the length, a family-friendly version of the Global Guidelines on Medical Care for Adults with Down Syndrome simplifies the recommendations provided to clinicians nearly two years ago to offer adults with the Down syndrome and their families a friendly understanding of how their care should differ from that of typically developing adults.

“We created the guidelines following the highest standards so that we could be published in JAMA,” said Michelle Sie Whitten, president and CEO of the Global Down Syndrome Foundation, which originally created both the guide for clinicians and the family-friendly version. At this point, “we take it to the next level and empower adults with Down syndrome and their families to understand the guidelines and advocate for them with their healthcare providers.”

The revised version is based on feedback from focus groups including people with Down syndrome and their families, the Global Down Syndrome Foundation said, and it is available for free on the group’s website.

Going forward, the foundation said it is working to update the guidelines to include information on sleep apnea, blood cancers, solid tumor cancers, vision and eye problems, physiotherapy and fitness.

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