Health system encounters after loss to cardiology follow-up among patients with congenital heart disease

Objectives Many patients with congenital heart disease (CHD) are lost to cardiology follow-up, but may continue to receive care from other clinics or facilities in the same health system. We analyzed receipt of care at other locations within a single rural academic health system after loss to follow-up in a pediatric cardiology clinic. Material and methods Patients with CHD seen in the clinic during 2018 and subsequently lost to cardiology follow-up were included in the study. Subsequent visits to other locations, including other subspecialty clinics, primary care clinics, the emergency department (ED), and the hospital, were tracked through 2020. Results Of 235 patients (median age 7 years, 136/99 female/male), 96 (41%) were seen elsewhere in the health system after loss to cardiology follow-up, most commonly by other subspecialty clinics or in the ED. Patients with medical comorbidities, Medicaid insurance, and those living closer to the clinic were most likely to continue receiving care within the same health system. Conclusions Patients with CHD are frequently lost to cardiology follow-up. Our study supports collaboration across specialties and between cardiology clinics and affiliated EDs to identify patients with CHD who have been lost to cardiology follow-up but remain in contact with the health system. A combination of in-person and remote outreach to these patients may help them re-establish cardiology care.