Abstract 15423: Hope is Not a Plan: Re-engaging Transition-aged Young Adults with Congenital Heart Disease Actively Missing from Cardiac Care

Introduction: Many studies describe gaps in care for youth with congenital heart disease (CHD), but few reach out to patients actively missing from care. Our study goal was to identify young adults with CHD actively missing from cardiac care to: 1) administer a needs assessment and 2) re-engage patients in cardiac care. Methods: We performed a retrospective review of outpatient medical records (2012-2019) for patients 15-21 yrs with CHD at Texas Children’s Hospital. ICD 9/10 codes identified CHD patients; those ≥1 year beyond requested clinic follow-up were defined as ‘actively missing’. Sociodemographic data was collected, and a telephone needs assessment conducted to determine CHD knowledge, barriers to care, and health status. Either a patient or parent completed the survey and was offered to re-engage in cardiac care. Descriptive statistics were performed on available data. Results: Of 1057 CHD patients, 33% (n=353) were actively missing. Of those missing, 58% were male and median age was 17 yrs (IQR 16-19). Patients were 46% Non-Hispanic White, 9% Non-Hispanic Black, and 33% Hispanic. Moderately complex CHD was noted in 71%. Insurance status was 63% private and 31% public. Ninety-eight patients/parents (28%) participated in our survey. Fifty-two percent reported having no cardiac care, often citing lack of or incompatible hospital insurance (33%; n = 32). Active cardiac symptoms were reported in 25%. Half of patients felt they could explain their cardiac condition well, and 82% could name their medications. Scheduling barriers (26%; n = 25) and being unaware adults could be cared for at our heart center (15%; n = 15) were the most common obstacles to re-engaging in care. Participants felt text messaging and scheduling visits during cardiology clinic would improve care access. More than half of patients/parents (55%) accepted our help to re-engage in cardiac care (scheduling assistance). Conclusions: This data suggests patients require assistance beyond CHD knowledge to stay in care. Problems with insurance, scheduling, and perceptions of adult CHD care were key barriers to maintaining cardiac care despite moderate CHD complexity and active symptoms. Future quality initiatives should include scheduling, insurance coverage, and adult CHD services.