Transition for adolescents with a rare disease: results of a nationwide German project

Research output: Contribution to journalResearch articleContributedpeer-review


  • Corinna Grasemann - , Ruhr University Bochum (Author)
  • Jakob Höppner - , Ruhr University Bochum (Author)
  • Peter Burgard - , Heidelberg University  (Author)
  • Michael M. Schündeln - , University of Duisburg-Essen (Author)
  • Nora Matar - , Ruhr University Bochum (Author)
  • Gabriele Müller - , Center for Evidence-Based Healthcare (Author)
  • Heiko Krude - , Charité – Universitätsmedizin Berlin (Author)
  • Reinhard Berner - , Department of Paediatrics (Author)
  • Min Ae Lee-Kirsch - , Department of Paediatrics (Author)
  • Fabian Hauck - , Ludwig Maximilian University of Munich (Author)
  • Kerstin Wainwright - , Charité – Universitätsmedizin Berlin (Author)
  • Sylvana Baumgarten - , Charité – Universitätsmedizin Berlin (Author)
  • Janet Atinga - , Ruhr University Bochum (Author)
  • Jens J. Bauer - , Ruhr University Bochum (Author)
  • Eva Manka - , University of Duisburg-Essen (Author)
  • Julia Körholz - , Department of Paediatrics (Author)
  • Cordula Kiewert - , University of Duisburg-Essen (Author)
  • André Heinen - , Dresden University of Technology (Author)
  • Tanita Kretschmer - , Department of Paediatrics (Author)
  • Tobias Kurth - , Charité – Universitätsmedizin Berlin (Author)
  • Janna Mittnacht - , Heidelberg University  (Author)
  • Christoph Schramm - , University of Hamburg (Author)
  • Christoph Klein - , Ludwig Maximilian University of Munich (Author)
  • Holm Graessner - , University of Tübingen (Author)
  • Olaf Hiort - , Universitätsklinikum Schleswig-Holstein - Campus Kiel. (Author)
  • Ania C. Muntau - , University of Hamburg (Author)
  • Annette Grüters - , Charité – Universitätsmedizin Berlin (Author)
  • Georg F. Hoffmann - , Heidelberg University  (Author)
  • Daniela Choukair - , Heidelberg University  (Author)


Purpose: The transition process from paediatric/adolescent to adult medical care settings is of utmost importance for the future health of adolescents with chronic diseases and poses even more difficulties in the context of rare diseases (RDs). Paediatric care teams are challenged to deliver adolescent-appropriate information and structures. Here we present a structured transition pathway which is patient-focused and adoptable for different RDs. Methods: The transition pathway for adolescents 16 years and older was developed and implemented as part of a multi-centre study in 10 university hospitals in Germany. Key elements of the pathway included: assessment of patients’ disease-related knowledge and needs, training/educational and counselling sessions, a structured epicrisis and a transfer appointment jointly with the paediatric and adult specialist. Specific care coordinators from the participating university hospitals were in charge of organization and coordination of the transition process. Results: Of a total of 292 patients, 286 completed the pathway. Deficits in disease-specific knowledge were present in more than 90% of participants. A need for genetic or socio-legal counselling was indicated by > 60%. A mean of 2.1 training sessions per patient were provided over a period of almost 1 year, followed by the transfer to adult care in 267 cases. Twelve patients remained in paediatric care as no adult health care specialist could be identified. Targeted training and counselling resulted in improved disease-specific knowledge and contributed to empowering of patients. Conclusion: The described transition pathway succeeds to improve health literacy in adolescents with RDs and can be implemented by paediatric care teams in any RD specialty. Patient empowerment was mainly achieved by individualized training and counselling.


Original languageEnglish
Article number93
Pages (from-to)1-9
Number of pages9
JournalOrphanet journal of rare diseases
Issue number1
Publication statusPublished - 25 Apr 2023

External IDs

PubMed 37098531
Mendeley 52643b92-7e4c-3b8e-98b8-d9c68e269d60



  • Adolescent health, Empowerment, Health literacy, Pathway, Rare disease, Transition, Humans, Patient Participation, Rare Diseases, Adolescent, Child, Chronic Disease, Germany, rare disease, adolescent health, transition, empowerment, health literacy, pathway

Library keywords