Clinical Report: Redefining Fontan Care: The Socio-Economic Impact of SVHD on Families

Overview

A recent survey highlights the socio-economic and psychological impacts of single ventricle congenital heart disease (SVHD) on families. Over half of the parents reported changes in employment due to their child's diagnosis.

Background

Single ventricle congenital heart disease (SVHD) presents medical challenges and social and economic burdens for affected families. Understanding these impacts is crucial for healthcare providers. The Fontan Clinic at Phoenix Children’s has initiated efforts to address these challenges through a multidisciplinary approach.

Data Highlights

Key Findings

• Over 50% of parents changed jobs or work hours due to their child's diagnosis.
• 60% of respondents lived in rural or remote areas, affecting access to care.
• 50% of parents reported mental health issues.
• 60% of children were reported to be dealing with anxiety, depression, or social isolation.
• The survey achieved a completion rate of over 96% after switching to paper distribution.

Clinical Implications

Healthcare providers should consider the socio-economic and mental health challenges faced by families of SVHD patients. Incorporating family-centered approaches and providing resources for mental health support may improve overall care outcomes.

Conclusion

The findings from the Fontan Clinic survey highlight the needs of families affected by SVHD.

Related Resources & Content

1. Pediatric Cardiology, 2025 -- Factors Influencing Weight Gain at Different Stages of the Fontan Pathway for Children with Functionally Single Ventricle Heart Disease
2. Pediatric Cardiology, 2025 -- Characteristics Associated with Poor Long-Term Outcomes in Patients with Fontan Palliation: A Case-Control Study
3. Pediatric Cardiology, 2025 -- Fenestration Re-creation for Early Fontan Deterioration: Long-Term Hemodynamic and Clinical Outcomes
4. 2025 Guideline for the Management of Adults With Congenital Heart Disease - Professional Heart Daily | American Heart Association
5. Pediatric Cardiology — The Fontan Procedure: Addressing Associated Anomalies and Long-Term Impact
6. 2025 AAP National Conference and Exhibition
7. 2025 Guideline for the Management of Adults With Congenital Heart Disease - Professional Heart Daily | American Heart Association
8. e-kcj.org
9. Prevalence, Risk Factors, and Prognosis for Fontan-Associated Liver Disease: A Systematic Review and Exploratory Meta-Analysis - PMC
10. The Fontan Outcomes Network: Findings After 2 Years and 1121 Participants - PubMed
11. Adults with Congenital Heart Disease Guide
12. Contemporary outcomes and health care costs associated with single-ventricle heart failure admissions in adults in the United States - PubMed
13. Health-related quality of life and influencing factors in parents of children with congenital heart disease: a systematic review and meta-analysis
14. https://www.additionalventures.org/wp-content/uploads/2025/09/Cost-of-cCHD-in-the-US-Additional-Ventures-2025-09-06.pdf
15. Out-of-Pocket Costs and Health-Related Social Needs Among Households With Children | Health Policy | JAMA Network Open | JAMA Network