Abstract 4357233: Evaluation of a Family-Centered Decision Aid on Parental Well-being After a Life-Threatening Congenital Heart Defect Diagnosis

Abstract

Introduction: A prenatal diagnosis of severe congenital heart disease (CHD) can significantly impact parental physical and mental health as they face complex decisions about life-sustaining treatment for their fetus. Evidence-based decision support tools for this situation, such as decision aids, are limited, and their effects on mental health and quality of life in this population remain unclear. Aim and Hypothesis: To assess whether a decision aid designed with caregiver and provider input improves psychological distress, grief, and health-related quality of life in parents facing a prenatal CHD diagnosis. We hypothesized that parents receiving the decision aid would report better outcomes (less distress and grief) than controls. Methods: This study was conducted as an extension to a randomized clinical trial (NCT04437069), where parents whose fetus was diagnosed with CHD were assigned to receive either (a) a decision aid (DA) alone, or (b) a DA with a values clarification exercise. A prospective control group was enrolled while the DA was still in development. Surveys were administered at diagnosis, 1–2 weeks post-DA viewing, 1-month post-decision, and 3 months post-decision (control group completed all but the post-DA survey). The primary outcome was psychological distress (Brief Symptom Inventory Global Severity Index). Secondary and exploratory outcomes included perinatal grief, mental and physical health (SF-12), and the Impact of a Child with Congenital Anomalies on Parents (ICCAP) subscales. Outcomes were compared between combined DA group participants and controls using linear mixed-effects models, with the primary focus on 3-month outcomes. Results: The control group (n= 35; mean age 27.8 ± 4.4 years) was 20% male, 97.1% White, and 11.4% Latino, while the decision aid group (n = 62; mean age 29.7 ± 5.6 years) was 36.5% male, 90.6% White, and 15.9% Latino. Parents who received the DA had reduced psychological distress at 3 months compared to controls. Physical health, mental health and grief scores did not differ significantly at follow-up. Among ICCAP domains, “State of Mind” post-decision was rated significantly better in the DA group compared to the control group. Conclusion: A decision aid appeared to reduce distress and improve parental state of mind during decision-making for severe fetal CHD, supporting its potential as a valuable resource for parents.