Hope is No Plan: Uncovering Actively Missing Transition-Aged Youth with Congenital Heart Disease

Background and ObjectivesStudies describing gaps in care for youth with congenital heart disease (CHD), focus on those who have returned to care, but rarely those actively missing from care. Our objective was to determine barriers for young adults with CHD actively missing from cardiac care and to re-engage them in care.MethodsRetrospective single-center cohort study of cardiology clinic patients ages 15-21 years with CHD between 2012-2019 for patients actively missing from care (≥12 months beyond requested clinic follow-up). We conducted prospective interviews, offered clinic scheduling information and recorded cardiac follow-up. Data was analyzed using descriptive statistics, univariable, and multivariable logistic regression.ResultsOf 1053 CHD patients, 33% (n=349) were actively missing. Of those missing, 58% were male and median age was 17 yrs (IQR 16-19). Forty-six percent were Non-Hispanic White, 33% Hispanic, and 9% Black. Moderately complex CHD was in 71%, and 62% had private insurance. Patients with simple CHD, older age at last encounter (18-21), and scheduled follow-up >12 months from last encounter were more likely to be actively missing. Interviews were completed by 125 patients/parents (36%). Lack of cardiac care was reported in 52%, and common barriers included: insurance (33%), appointment scheduling (26%), and unknown ACHD center care (15%). Roughly half (55%) accepted appointment information, yet only 3% successfully returned.ConclusionsMany patients require assistance beyond CHD knowledge to maintain and re-engage in care. Future interventions should include scheduling assistance, focused insurance maintenance, understanding where to obtain ACHD care, and educating on need for lifelong care.Article SummaryThere is a growing population of youth with congenital heart disease leaving cardiology care; we investigate patients actively missing from care and target their re-engagement.What’s Known on This Subject?Maintaining cardiac care is a problem for many patients with congenital heart disease, especially teens and young adults, and characteristics of both patients and their healthcare environment contribute to the maintenance and ability to continue appropriate cardiac care.What This Study AddsThis study uniquely investigates patients with congenital heart disease that are actively missing from care, and investigates if a simple intervention of contacting them while they are missing to re-engage them in care impacts their re-entry into cardiac care.Contributors’ Statement PageJudson Moore conceptualized and designed the study, designed data collection instruments, collected data, drafted the initial manuscript, and completed necessary revisions to final manuscript.Keila Lopez conceptualized and designed the study, designed data collection instruments, critically reviewed data, revised manuscript drafts, and provided content expertise.Shreya Sheth conceptualized and designed the study, critically reviewed data, and revised the manuscript.Wilson Lam contributed to study design, critically reviewed data for intellectual content, and revised the manuscript.Alexander Alexander, Andre Espaillat, and John Shabosky designed data collection instruments, collected data, and reviewed/revised the manuscript.Karla Dyer performed data extraction, data cleaning, and reviewed/revised the manuscript.Nicole Broussard and Donna Lovick provided expert knowledge for interpretation of data and reviewed/revised the manuscript.All authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work.