O2060: Socio-economic Impact of Single Ventricle Heart Disease on Families: Single-Center Survey of Caregivers

Background: Patients with single-ventricle congenital heart defects (SVCHD) have highly complex, life-long medical needs. Several studies have focused on SVCHD patient outcomes, however the impact of the disease on caregivers remains largely unexplored. We surveyed families with SVCHD patients to identify the impact of their child’s diagnosis on their socio-economic and psychological well-being.

Methods: A single-center survey was conducted by the multi-disciplinary Fontan clinic (MDC) at our tertiary center using a mixed-methods approach. Quantitative data included age, parental education, insurance status, and travel distance, while qualitative responses explored caregiver perceptions of healthcare access and psychosocial stressors. Descriptive statistics and thematic analysis were used to interpret the findings.

Results: Fifty-four families returned the completed surveys. Majority of caregivers were mother (91%) and between the ages 30-50 years (72%), and 53% had a college degree. Ethnic minorities were well represented in the sample with 54% Hispanic respondents. We identified significant social and financial impact of SVCHD diagnosis on the families, including high out-of-pocket costs (20%), and most (67%) worried about their child’s future medical expenses. Over half the caregivers (55%) had to change jobs, reduce working hours, or leave the workforce entirely to care for their child, and 59% reported that their child's diagnosis negatively impacted their income. Only one-third (34%) felt that they were warned about potential high cost of medical care at diagnosis. Geographic barriers were commonly reported, and 62% were unaware of Medicaid-provided transportation. Psychological impact on the families was significant. Over 51% caregivers suffered from anxiety, depression or social isolation; and majority of them (71%) were not aware of mental health resources. Majority of parents reported not being warned about potential mental health problems for their SVCHD child and were not warned about possibility of caregiver burnout (72%). Although the information provided in the Fontan clinic appeared overwhelming to 30% of caregivers, all of them found the MDC Fontan clinic visit to beneficial and appreciated the coordinated care and meeting all specialists on the same day.

Conclusion: Our caregiver survey highlights the significant impact of SVCHD diagnosis on the lives of caregivers. The survey also reveals that majority of the caregivers are not warned or prepared for this potential socio-economic-psychological impact of caring for these medically complex children. Parental counseling at the time of SVCHD diagnosis should focus not only on patient disease and clinical outcomes, but also on these important factors; to allow more informed decision making. There is need for improved financial support, mental health resources, transportation assistance, and caregiver education, to reduce the impact of SVCHD on families.