Long‐term follow‐up after transfer of care to adult healthcare in paediatric liver transplant recipients

OBJECTIVES: Paediatric liver transplantation (pLT) is associated with excellent long-term survival and quality of life. As a growing proportion of recipients survive into adulthood, long-term follow-up after transfer from paediatric to adult care is increasingly important. We aimed to describe patient and graft survival, retention in care, adherence, medical complications and achievement of an ideal outcome after transfer of care. METHODS: This prospective observational study included all pLT recipients who entered our centre's transition programme between January 2010 and December 2024. Prespecified outcomes included patient and graft survival, retention in adult care, attendance and medication adherence, a composite non-adherence outcome, post-transfer medical complications and the proportion achieving an ideal outcome at predefined timepoints. RESULTS: Sixty patients were included (53.3% male; median age at pLT 5 [2.1-10.4] years; median age at transfer of care 19.8 [interquartile range (IQR) 18.9-24] years). Patient survival at 1, 5, 10 and 15 years after transfer of care was 98%, 96%, 93% and 93%, while graft survival was 98%, 94%, 91% and 75%, respectively. At the time of transfer of care, 55% of patients fulfilled criteria for an ideal outcome; this decreased to 41.6% at 5 years and 25% at 10 years. Medication non-adherence was documented in 20%, and composite non-adherence in 25%. The tacrolimus Medication Level Variability Index was significantly associated with composite non-adherence (p = 0.007) and was higher in patients who developed chronic rejection than in those who did not (p = 0.05). CONCLUSIONS: Despite excellent long-term survival, pLT recipients reaching adulthood face increasing challenges over time, particularly regarding adherence. These descriptive findings support continued, individualised follow-up after transfer to adult healthcare.