National survey of adult transplant hepatologists on the pediatric-to-adult care transition after liver transplantation

Adult transplant hepatologists face challenges in providing care to young adults who received liver transplants during childhood. Because prior studies have focused mainly on pediatric providers, understanding these issues from the perspective of the adult hepatologist may provide novel insights and identify key barriers to care in this population. We conducted a national survey of adult transplant hepatologists to assess factors that may affect the transition of recipients from pediatric care to adult care. More than half of transplant hepatologists from all United Network for Organ Sharing regions (236/408 or 57.8%) completed the survey, and they reported that only 46.1% of patients arrived at their first adult clinic with both adequate knowledge of their condition and a parent/guardian. Moreover, 32.4% reported having no transition strategy, and only 15.5% reported having a formal transition program. The respondents reported that the greatest barriers to optimal care were patients' poor adherence and their limited knowledge and management of their condition. Those who reported participating in a formal transition program were less likely to report an inability of patients to discuss the impact of their condition on their overall daily life, fitness, and sexuality as a barrier to transition (odds ratio 0.40, 95% confidence interval 50.16-1.00). Our survey suggests that a formalized transition process is uncommon in adult transplant hepatology clinics and that improving patient knowledge, understanding specific components of effective transition programs, and incorporating input from adult providers in designing such programs may improve this process. Liver Transpl 21:213-223, 2015.