Catalysts for Change: The Role of Nonprofits in Solving Single Ventricle Heart Disease
2. SV Incidence and Outcomes
3. Economic Burden of SV
4. Funding Landscape
5. Research Landscape
6. SV: A Model for Innovative Investment
7. Nonprofits: Catalysts for Change
- Significant co-morbidities: The Fontan circulation results in chronic elevation in venous pressure and decreased cardiac output which predisposes SV patients to many co-morbidities, including circulatory failure, ventricular dysfunction, atrioventricular valve regurgitation, arrhythmia, protein losing enteropathy, plastic bronchitis, liver fibrosis, and renal dysfunction .
- Neurodevelopmental disabilities: Although surgical outcomes have improved for those with cCHDs, neurological outcomes have not . A review of studies around the neurodevelopmental outcomes of children with CHDs found that those with cCHDs were at significantly elevated risk for developmental delays in intelligence, academic achievement, language, visual construction and perception, attention, executive functioning, fine motor skills, gross motor skills, and psychosocial maladjustment . Executive dysfunction increases with the severity of CHD .
- Economic burden on parents and caregivers: Financial burdens are more common among families with a child with CHD than families who have children with other types of special health needs . A survey of US households from 2011 to 2017 that included nearly 200 families living with CHD found that nearly half of these families reported experiencing some level of financial hardship due to their child’s medical bills; 17% stated they could not pay their medical bills at all 
- Economic burden on adult patients: Studies have found an employment rate of only 47% for adults with cCHDs [15,29]. Adults with cCHDs are more likely than those with less severe forms of CHD to have household incomes below USD 50,000 . The total burden of CHD has been estimated at USD 500,000 per adult when considering medical costs and decreased earnings .
Conflicts of Interest
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Davis, K.A.; Pickles, D.M.; Keller, K.E. Catalysts for Change: The Role of Nonprofits in Solving Single Ventricle Heart Disease. J. Cardiovasc. Dev. Dis. 2022, 9, 220. https://doi.org/10.3390/jcdd9070220
Davis KA, Pickles DM, Keller KE. Catalysts for Change: The Role of Nonprofits in Solving Single Ventricle Heart Disease. Journal of Cardiovascular Development and Disease. 2022; 9(7):220. https://doi.org/10.3390/jcdd9070220Chicago/Turabian Style
Davis, Kaitlin A., Diane M. Pickles, and Kirstie E. Keller. 2022. "Catalysts for Change: The Role of Nonprofits in Solving Single Ventricle Heart Disease" Journal of Cardiovascular Development and Disease 9, no. 7: 220. https://doi.org/10.3390/jcdd9070220