Introduction: The Fetal Heart Program at Children’s Hospital of Philadelphia offers prenatal counseling to families with congenital heart disease diagnoses. This center has yet to examine family satisfaction with counseling, especially those with complicated single ventricle diagnoses. While families may receive sufficient education about their child’s condition, better communication may be needed to prepare them for potential neurological and behavioral complications.
Methods: Through chart review, 355 patient families with single ventricle diagnoses who utilized CHOP prenatal counseling within the past 10 years were identified. Retrospective surveys including Likert scales and open-ended questions were distributed by email. 65 responses were received. Average satisfaction scores with members of the clinical team and average levels of preparedness for aspects of clinical care were calculated.
Results: Analysis is ongoing. Initial findings revealed high levels of satisfaction with the clinical team. High levels of preparedness were seen in all areas except for neurological and behavioral complications. Free responses indicated overall gratefulness for the counseling and familial resilience despite challenging clinical courses.
Discussion: Single ventricle heart disease requires significant surgical intervention and places extreme stress on families. CHOP prenatal counseling provides families with comprehensive education about their child’s condition but fails to fully prepare them for potential neurological and behavioral problems. Additional support is needed to assist families in navigating these complications and determine risk factors for their development.
Houlihan, Taylor Hartzel and Rychik, MD, Jack, "Factors influencing efficacy and satisfaction in prenatal counseling for families with single ventricle heart disease" (2021). Phase 1. Paper 10.