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Summary of Pediatric Cardiology. https://doi.org/10.1007/s00246-025-03979-2
Dr. Stephanie S. Gaydos et al.
Points
- Congenital heart disease in adults with Down syndrome does not reduce employment rates or overall community engagement.
- Volunteerism is significantly higher among adults with Down syndrome and congenital heart disease compared to those without.
- Adults with Down syndrome and congenital heart disease show higher rates of stroke and seizure, but similar psychological comorbidities.
- Quality of life scores are comparable between adults with Down syndrome, regardless of the presence of congenital heart disease.
- Caregivers of adults with Down syndrome and congenital heart disease experience a significantly greater burden than others.
Summary
This cross-sectional study investigated whether congenital heart disease (CHD) influences community engagement, neuropsychiatric conditions, and quality of life (QOL) in adults with Down syndrome (DS). A total of 287 adults with DS, aged 18–45 years, and their caregivers completed surveys. Among these, 104 subjects (36%) had DS and CHD (DS + CHD), while the remaining 64% had DS alone. The study employed adapted instruments to assess various outcomes, with employment designated as the primary outcome.
Key findings indicate that adults with DS + CHD reported similar employment rates (61%) to those with DS alone (60%, p = 0.87), suggesting CHD does not negatively impact employment. However, current volunteerism was significantly higher in the DS + CHD group (32%) compared to the DS alone group (19%, p = 0.01). While DS + CHD subjects exhibited higher rates of stroke and seizure (p < 0.01 for both), there was no significant difference in psychological comorbidities (p = 0.67), with 69% of all DS adults reporting mental health problems.
Proxy-reported mean QOL scores were comparable between both DS groups (p = 0.52). Although mild-moderate caregiver burden was present in both groups, a significantly greater burden was reported by guardians of DS + CHD individuals (p = 0.03). These results suggest that despite increased neurological comorbidities and caregiver burden, CHD in adults with DS is not associated with reduced employment or community engagement, offering a potentially optimistic outlook for families.
Link to the article: https://link.springer.com/article/10.1007/s00246-025-03979-2
REFERENCE
Gaydos, S. S., Benitez, A., Nietert, P. J., McHugh, K. E., & Atz, A. (2025). Reported impacts of congenital heart disease on functional outcomes in adults with down syndrome. Pediatric Cardiology. https://doi.org/10.1007/s00246-025-03979-2
