Development of a structured transition program for adolescents and young adults with a chronic rare disease: Results from the German consortium TRANSLATE NAMSE

Abstract

The successful organization and management of the transition and transfer of adolescents and young adults with a chronic rare disease from pediatric to adult care is an important but complex task in the decentralized German healthcare system. The structured transition pathway of the consortium TRANSLATE-NAMSE, funded by the innovation fund of the Federal Joint Committee (G-BA, funding number 01NVF16024 TRANSLATE-NAMSE) is a program that has meanwhile been tested in practice. The main principle of the transition in this program is the quality-assured transfer of information from the pediatric treatment team to the adolescent patient as well as to the healthcare provider(s) of the adult care facility. Based on a structured assessment and documentation of the individual need for information, the transition training is carried out by the pediatric treatment team for adolescent patients aged 16 years and older. In addition, transfer clinics, with the representatives of the previous pediatric and the future adult healthcare providers and the transfer of all necessary medical documentation to the patient and to the new health care provider are part of the program. A final evaluation of the project is expected in late 2020.