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

Survey results reveal the long-term socio-economic and psychological impacts of single ventricle congenital heart disease (SVHD) on families. See how cardiologists Deepti Bhat, MD, and Naim Duran, MD, contributors to this research, are using findings to transform Fontan Clinic care at Phoenix Children’s.

By
August 12, 2026
6 min

Phoenix Children's Medical Connection

Objective:

To evaluate the social, economic, and psychological impacts of single ventricle congenital heart disease (SVHD) on families.

Approach:

Survey Development: A caregiver survey was developed to assess the impact of SVHD on ethnically and geographically diverse families, with a focus on increasing response rates.
Multidisciplinary Care: The Fontan Clinic at Phoenix Children’s adopted a multidisciplinary approach to provide comprehensive care, including various specialties.

Key Findings:

Over half of parents changed jobs or quit working due to their child's diagnosis.
60% of respondents lived in rural areas, affecting access to care.
About half of parents and one-third of siblings reported mental health issues.
Families faced significant financial burdens related to the child's condition.

Interpretation:

The survey findings highlight the need for healthcare providers to consider quality of life as a critical outcome and to develop more comprehensive, family-centered approaches to care.

Limitations:

Initial survey distribution via email resulted in a low response rate, indicating access barriers.
The survey primarily captured experiences from families attending the Fontan Clinic, which may not represent all SVHD families.