Loss to Specialized Cardiology Follow-Up in Adults Living with Congenital Heart Disease

Background: Much has been written about the loss to follow-up in the transition between pediatric and adult Congenital Heart Disease (CHD) care centers. Much less is understood about the loss to follow-up (LTF) after a successful transition. This is critical too, as patients lost to specialised care are more likely to experience morbidity and premature mortality. Aims: To understand the prevalence and reasons for loss to follow-up (LTF) at a large Australian Adult Congenital Heart Disease (ACHD) centre. Methods: Patients with moderate or highly complex CHD and gaps in care of >3 years (defined as LTF) were identified from a comprehensive ACHD database. Structured telephone interviews examined current care and barriers to clinic attendance. Results: Overall, 407 (22%) of ACHD patients (n = 1842) were LTF. The mean age at LTF was 31 (SD 11.5) years and 54% were male; 311 (76%) were uncontactable. Compared to adults seen regularly, lost patients were younger, with a greater socio-economic disadvantage, and had less complex CHD (p < 0.05 for all). We interviewed 59 patients (14%). The top 3 responses for care absences were "feeling well" (61%), losing track of time (36%), and not needing follow-up care (25%). Conclusions: A large proportion of the ACHD population becomes lost to specialised cardiac care, even after a successful transition. This Australian study reports younger age, moderate complexity defects, and socio-economic disadvantage as predictive of loss to follow-up. This study highlights the need for novel approaches to patient-centered service delivery even beyond the age of transition and resources to maintain patient engagement within the ACHD service.