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?

Methods:

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.

Results:

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.

Conclusions:

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

Perspective:

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 & Pediatrics, Congenital Heart Disease, CHD & Pediatrics and Interventions, CHD & 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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