O1009: Understanding the Psychosocial Impact of Congenital Heart Disease in the Outpatient Setting

Background: Caring for a child with complex congenital heart disease(CCHD) is filled with much uncertainty and stress; however, no studies currently exist characterizing the unique burdens experienced by families with CCHD during interstage (the period between 1st and 2nd palliative procedures) in the outpatient setting. The purpose of this study is to characterize the psychosocial and financial impact of CCHD for families during interstage in the outpatient setting.

Methods: This is a single-center, cross-sectional, mixed-methods study of families with a child with CCHD being followed in an outpatient interstage home monitoring clinic between 8/2023-4/2024. Participants completed surveys on demographics, health literacy, resiliency, caregiver quality of life, financial toxicity, parental stress, coping patterns, and baseline anxiety. Participants were also invited to participate in an in-depth one-on-one interview to further characterize their outpatient experience. Interviews were transcribed and thematically coded. Descriptive and univariate analyses were utilized to evaluate survey data.

Results: A total of 18 participants (16(89%) female, 8(44%) White non-Hispanic, 8(44%) Hispanic, 14(78%) English-speaking) were included. All completed the surveys and 10(56%) participated in an interview. Prominent themes included non-medical financial strain, social and geographical isolation, emotional burden, fears surrounding the child’s next congenital heart surgery, and a strong sense of purpose when caring for their child with CCHD (Figure 1). Importantly, 7(38%) participants reported needing to quit their job in order to care for their child and 8(44%) felt they had very little to no control of their financial situation. Fourteen(78%) participants reported feeling very satisfied with their happiness and 15(83%) felt very satisfied with the meaning and purpose of their life. Eleven(61%) reported feeling socially isolated and dissatisfied with their social engagement outside of the home. Families with an annual household income less than $50,000 were more likely to be at risk for limited health literacy (6(86%) vs 4(36%), p=0.034). Families with an annual household income less than $50,000, Spanish-speaking families, families with 2 or more dependents, and families with Medicaid insurance were more likely to experience financial stress, a measure of one’s perception of their objective financial burden (p < 0.05). (Figure 2) Two(11%) parents declined to share their annual household income.

Conclusion: Caring for a child with CCHD in the outpatient setting is immensely costly to families, with socially disadvantaged families more likely to experience financial toxicity and psychosocial stress. Future studies should evaluate the objective financial burden of CCHD in the outpatient setting and explore opportunities to redesign care delivery for this population.