Introduction: Thanks to increased knowledge in how to treat children undergoing intestinal or multivisceral transplantation, the number of patients graduating from pediatric to adult care is expected to increase. To this date, 9 intestinal pediatric transplantations have been performed with a 5 year survival, close to 90%. Three patients have transitioned to adults. Intestinal and multivisceral transplanted are fragile patients. According to our experience they don´t mature normally. They risk pain-killer addiction and reduced psychological well-being. In addition, adolescence is a period of increased search for independence and rebellious behavior. Previous studies of young transplanted adults show that the transition process may manifest as non-adherence and lack of engagement with medical services. There are reasons to believe that these findings are highly applicable to young adults with intestinal or multivisceral graft. At Sahlgrenska University Hospital a multidisciplinary, intestinal failure center (TSC) including adult and pediatric care has been founded. This unique organization provides new opportunities to develop an adapted, person-centered transition program, aiming to ensure a successful transition.
Methods: We have used our experience from the transition process of liver transplanted adolescents and modified the program to intestinal or multivisceral transplanted patients. We have established two new roles - transition coordinators; one at the children hospital and one at the adult hospital. These two nurses are responsible for the overall transition process and collaborate closely. Once a month a multidisciplinary conference is held at TSC and the transition coordinators can report progress, discuss patient problems and update the individual transition plan. A set of screening instruments to identify symptoms, evaluate wellbeing and assess adherence has been agreed.
Results: Preliminary findings from this work is reported. The team conferences enables effective decisions and improved team work. The transition coordination provides security for the patient, the parents and the team. The screening instruments improve assessment, dialog and education in patient contact.
Conclusion: This transition program and new unique organization contribute to a higher level of adherence to both long-term medication and lifestyle changes, and thereby increase chances for improved quality of life and graft survival.