Transition after pediatric liver transplantation - Perceptions of adults, adolescents and parents.

AIM: To develop a locally adapted, patient-focused transition-program, we evaluated the perceptions of adult and adolescent patients and parents regarding transition-programs and transfer.

METHODS: We evaluated these perceptions by analyzing the responses of pre-transfer adolescents ( n = 57), their parents ( n = 57) and post-transfer adults ( n = 138) from a cohort of pediatric-liver-transplant-patients using a self-designed questionnaire. Furthermore, we compared a responder group with a non-responder group as well as the provided answers with baseline characteristics and clinical outcomes to exclude selection bias, characterize high-risk patients for non-adherence and test for gender differences. Included in our study were all pre-transfer liver transplant and combined liver-kidney transplant recipients aged 11-19 currently under our care and their parents, as well as all post-transfer liver transplant and combined liver-kidney transplant recipients aged ≥ 17 years who had received a liver transplant and were treated at our center during childhood.

RESULTS: Fifty-seven (24 female) pre-transfer patients who received a transplant in the previous 8-186 mo (mean 93.9 mo, median 92 mo, SD 53.8 mo) and 138 (57 female) post-transfer patients who received a transplant in the preceding 2-29 years (mean 15.6 years, median 17, SD 6.90) met the inclusion criteria. A total of 67% of pre-transfer patients (71% of female; 64% of male; P = 0.78) and their parents replied. Additionally, 54% of post-transfer patients (26% of female; 48% of male; P = 0.01) replied. No differences in clinical outcomes were observed between the responder and non-responder groups, and responses did not differ significantly based on clinical complication rates, although they did differ based on gender and the location of medical follow-up after transfer. Adolescents were generally ambivalent toward transition programs. However, adults strongly supported transition programs.

CONCLUSION: Transition programs need to be developed in close collaboration with adolescents. The best clinical practices regarding transition should respect local circumstances, gender and the location of post-transfer medical follow-up.