Context Increasing success with solid organ transplantation in children has increased the numbers of adolescents and young adults who are at an age to transfer to adult healthcare. Objective To determine the nature of transfer/transition of adolescents and young adults to adult healthcare. Design Using a qualitative approach, 24 young adults provided answers to 12 questions about their transfer to adult healthcare. Responses were compared to identify themes. Setting Subjects had been pediatric patients at Children's Hospital of Pittsburgh. Most were transferred to the University of Pittsburgh Medical Center. Patients The subjects had received, or were on the list to receive, solid organ transplants and had been transferred within 18 months of the study. Results Twenty-four of 37 potential subjects completed interviews. Those who participated were enthusiastic about making a contribution to the transfer process. Most subjects cited difficulty leaving the pediatric system. Challenges included abrupt transfers, insufficient communication between pediatric and adult specialty providers, and becoming “lost to follow-up.” However, there was a consistent, clear statement that subjects preferred being treated as adults. They liked healthcare staff addressing them instead of their parents, being spoken to in an adult manner, and being responsible for their own care. Suggestions for improvement included early introduction of the concept of transition to adult care, providing written material about the transition process, and use of pediatric/adult social work collaboration to provide support for young adults in transition.
Assessment of Health Literacy and Self-reported Readiness for Transition to Adult Care Among Adolescents and Young Adults With Spina Bifida
