Variations in employment, volunteer participation, and group engagement between adults with each Down syndrome and CHD and people with DS alone. Credit score: Pediatric Cardiology (2025). DOI: 10.1007/s00246-025-03979-2
Adults with each Down syndrome and congenital coronary heart defects, also called congenital coronary heart illness (CHD), are displaying exceptional resilience regardless of going through important medical challenges, in line with a brand new MUSC examine revealed in Pediatric Cardiology. The examine discovered that adults ages 18 to 45 with each circumstances are simply as prone to work, volunteer and expertise the identical high quality of life as these with Down syndrome alone.
The examine was performed by way of the Pediatric Coronary heart Community, a consortium of main kids’s hospitals that features the MUSC Shawn Jenkins Kids’s Hospital. The community conducts analysis in kids and adults residing with CHD. Andrew Atz, M.D., professor and chairman of Pediatrics at MUSC, is the senior creator on the examine and a principal investigator for the Pediatric Coronary heart Community.
Understanding Down syndrome and CHD
Down syndrome is a genetic situation brought on by an additional copy of chromosome 21. This further chromosome impacts how the physique and mind develop. Down syndrome is the most typical genetic explanation for mental incapacity within the U.S.
Congenital coronary heart illness is a critical well being problem that impacts almost half of individuals with Down syndrome. It happens when there’s a defect in how the guts or blood vessels are fashioned at delivery.
For a lot of households, it is exhausting to know what life will seem like for kids with each circumstances.
“I think people want to know, ‘When my child grows up, will they live a normal life? Will they have a good life, a happy, a productive life?'” stated Stephanie Gaydos, M.D., affiliate professor of Pediatrics and lead researcher on the examine. “I think those are things that really matter a lot to people.”
To reply these questions, Gaydos designed her examine to take a deeper look. She aimed to search out out if adults residing with a twin prognosis of Down syndrome and CHD had larger difficulties with their day-to-day lives than these with a prognosis of Down syndrome alone. Gaydos, Atz and their staff additionally checked out different necessary well being points that happen extra generally in individuals with CHD or individuals with Down syndrome, like psychological well being issues or neurologic issues comparable to seizures and/or stroke, which may have an effect on high quality of life and employment talents.
The examine included 287 adults with Down syndrome, 104 of whom additionally had CHD, and their caregivers. Individuals had been invited to finish a complete on-line questionnaire that assessed medical historical past, employment/volunteer expertise, high quality of life, psychological well being and caregiver burden. Researchers then in contrast the outcomes between contributors with and with out CHD.
The questionnaire was created and administered utilizing REDCap, a safe, web-based software program platform developed at Vanderbilt College to assist information seize for analysis research, with the assistance of the REDCap staff on the South Carolina Scientific & Translational Analysis Institute.
Excellent news for sufferers and their households
Gaydos and her staff had been heartened by the examine’s findings.
“Is community engagement or quality of life worse in adulthood if you also have congenital heart disease?” Gaydos requested. “In our sample, we didn’t find that to be the case, which is fantastic.”
The researchers discovered that having each Down syndrome and CHD does not maintain individuals again from taking part of their communities. Adults with the twin prognosis are statistically simply as prone to maintain jobs as these with solely Down syndrome and reported extra volunteer participation—regardless of having extra neurologic issues. This data sheds gentle on how these well being points translate into adult-life functioning and in addition challenges long-held assumptions to supply a hopeful outlook for households and care suppliers.
Adults with Down syndrome and CHD confirmed almost similar employment charges as these with out CHD, at 61% and 60%, respectively. Charges of volunteerism had been much more placing—32% of contributors with Down syndrome and CHD volunteered of their communities, in contrast with 19% of contributors with simply Down syndrome.
Laying the groundwork for future analysis
For Gaydos and Atz, this analysis is only the start. They see this work as a basis for constructing a deeper understanding of life with these circumstances and tailoring medical care to assist long-term success extra totally.
“We think it’s a really optimistic finding for patients and their families, for children who are born with both of these health issues,” stated Gaydos. “Having a heart defect from birth plus Down syndrome doesn’t necessarily mean that you’ll be at lower odds for having a productive role in the community in adulthood.”
Extra data:
Stephanie S. Gaydos et al, Reported Impacts of Congenital Coronary heart Illness on Practical Outcomes in Adults with Down Syndrome, Pediatric Cardiology (2025). DOI: 10.1007/s00246-025-03979-2
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Research reveals promising high quality of life for these with Down syndrome and congenital coronary heart defects (2025, September 19)
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