Characteristics and Outcomes of Adult Congenital Heart Disease Patients Referred for Transplantation

Improvements in surgical techniques and specialised follow up care have resulted in an increasing number of patients with congenital heart disease (CHD) surviving into adulthood. Predicted outcomes for many CHD patients remain unknown as they represent a new clinical population. Late complications include ventricular failure, pulmonary hypertension and arrhythmias. Despite this growing population, the literature reports a stable rate of listing for heart transplantation, of 2.5%. Possible reasons for this relatively low figure include perceived higher mortality and complexity of transplant in CHD patients, lack of clarity as to which CHD patients would benefit most, and the clinical challenge of identifying the right time for transplantation in a chronic disease process. Recent studies suggest that early post transplant mortality is higher, however, that late mortality is similar to, or improved, compared to non-CHD patients. Emphasis has now shifted to evaluating which CHD patients would benefit from transplantation, and the optimal timing of referral. We retrospectively identified all CHD patients referred from a single centre to the local heart transplantation service (n = 29, years 1992–2016). Of these, 13 (45%) were actively waitlisted and 10 received heart transplantation. Evaluation of the baseline characteristics, the reason for transplant referral and the outcomes for those who were rejected and for those who received transplantation will be ascertained. Understanding this data has implications for local service provision. It is important to discuss these outcomes in the context of increasing global literature on the late management of adult CHD by cardiac transplantation.