Background Increased longevity in patients with congenital heart disease (CHD) is associated with late complications, mainly heart failure, which may not be amenable to redo surgery and become refractory to medical therapy and so, trigger referral for transplantation. We assessed the current role and future prospects of heart and heart-lung transplantation for patients with CHD in England.
Methods We performed a retrospective analysis of hospital episodes for England for 1997–2015, identifying patients with a CHD code (ICD-10 ‘Q2xx.x’), who underwent heart or heart-lung transplantation.
Results In total, 469 transplants (82.2% heart and 17.8% heart-lung) were performed in 444 patients. Half of patients transplanted had mild or moderate CHD complexity, this percentage increased with time (p=0.001). While overall, more transplantations were performed over the years, the proportion of heart-lung transplants declined (p<0.0001), whereas the proportion of transplants performed in adults remained static. Mortality was high during the first year, especially after heart-lung transplantation, but remained relatively low thereafter. Older age and heart-lung transplantation were strong predictors of death. While an increase in CHD transplants is anticipated, actual numbers in England seem to lag behind the increase in CHD patients with advanced heart failure.
Conclusions The current and future predicted increase in the numbers of CHD transplants does not appear to parallel the expansion of the CHD population, especially in adults. Further investment and changes in policy should be made to enhance the number of donors and increase CHD transplant capacity to address the increasing numbers of potential CHD recipients and optimise transplantation outcomes in this growing population.
- congenital heart disease
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KD and KM contributed equally.
Contributors Substantial contribution to the conception and design of the work: KD, AK. Acquisition, analysis and interpretation of data for the work: KD, AK, RAG, AHC. Drafting the manuscript and critical appraisal: KD, KM, RAG, NRB, SJW, LS, AHC, MAG, GPD, AK. Final approval of the published version: KD, KM, RAG, NRB, SJW, LS, AHC, MAG, GPD, AK. Guarantor: KD.
Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
Disclaimer No sponsor played any role in the design and conduct of this study, including in data collection, analysis, data interpretation, and in the preparation, review or approval of the manuscript.
Competing interests MAG and the Royal Brompton Hospital Adult Congenital Centre and Centre for Pulmonary Hypertension have received support from the British Heart Foundation. MAG, GPD and KD acted as consultants for Actelion UK, Pfizer UK and GSK UK and received unrestricted educational grants from Actelion and Pfizer. RAG acted as consultant for Lilly Spain and Pfizer Spain. AK has received an unrestricted research grant from Actelion Global. SJW has received unrestricted educational and research grants from Bayer UK, Pfizer UK, Actelion UK and GSK UK as well as the Pulmonary Hypertension Association (UK).
Provenance and peer review Not commissioned; externally peer reviewed.
Patient consent for publication Not required.