AIM To develop a locally adapted, patient-focused transitionprogram, we evaluated the perceptions of adult and adolescent patients and parents regarding transitionprograms and transfer.METHODS We evaluated these perce...AIM To develop a locally adapted, patient-focused transitionprogram, we evaluated the perceptions of adult and adolescent patients and parents regarding transitionprograms 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 nonadherence 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 liverkidney 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.展开更多
文摘AIM To develop a locally adapted, patient-focused transitionprogram, we evaluated the perceptions of adult and adolescent patients and parents regarding transitionprograms 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 nonadherence 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 liverkidney 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.
