Loss to Specialist Follow-Up in Congenital Heart Disease; Out of Sight, Out of Mind

Study Questions:

How commonly are adult patients with tetralogy of Fallot lost to follow-up, and what are the causes for and outcomes of lack of specialty care for this patient population?


A cohort study was performed, using data from the National Health Service in the United Kingdom. Follow-up status of all patients undergoing repair of tetralogy of Fallot between 1964 and 2009 was determined. An effort was made to contact and interview patients lost to follow-up to determine reasons for lack of specialty care. Patients were reached through the office of their general practitioner.


Of 893 patients known to be alive and living in the United Kingdom, 216 (24%) patients had not been seen at a specialist center in the last 3 years. The median age of patients lost to follow-up was 32 years, and the median duration of patients lost to follow-up was 22 years; 48% of late deaths occurred in patients lost to follow-up. Most of the patients were lost to follow-up prior to the development of formalized adult congenital heart programs. None of the patients lost to specialist follow-up had undergone pulmonary valve replacement, whereas 188 patients under specialist care have undergone the procedure.


The authors concluded that a significant proportion of adults with tetralogy of Fallot are not receiving specialty care.


This study, performed in the United Kingdom making use of National Health Service numbers to track patients, demonstrates a high rate of patients being lost to follow-up. The numbers in the United States are likely significantly higher, because additional barriers to care are in place, particularly lack of universal health coverage. While a disproportionate number of deaths appear to have occurred in patients lost to follow-up, the retrospective nature of the study and potential for confounding variables (for example, patient age) preclude the assumption of a causal relationship between death and follow-up status. The number of patients actually located and interviewed was relatively small (37/176), and may not be representative of the overall cohort of patients lost to follow-up. Finally, the study included only patients with tetralogy of Fallot, and may not generalizable to all patients with congenital heart disease.

Clinical Topics: Cardiac Surgery, Congenital Heart Disease and Pediatric Cardiology, Invasive Cardiovascular Angiography and Intervention, Cardiac Surgery and CHD and Pediatrics, Congenital Heart Disease, CHD and Pediatrics and Interventions, CHD and Pediatrics and Quality Improvement, Interventions and Structural Heart Disease

Keywords: Tetralogy of Fallot, Great Britain, Ophthalmoplegia, Follow-Up Studies, Heart Defects, Congenital, National Health Programs, Pulmonary Valve, Cardiac Surgical Procedures, United States

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