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

Publikation: Beitrag in FachzeitschriftForschungsartikelBeigetragenBegutachtung

Beitragende

  • Corinna Grasemann - , Ruhr-Universität Bochum (Autor:in)
  • Jakob Höppner - , Ruhr-Universität Bochum (Autor:in)
  • Peter Burgard - , Universität Heidelberg (Autor:in)
  • Michael M. Schündeln - , Universität Duisburg-Essen (Autor:in)
  • Nora Matar - , Ruhr-Universität Bochum (Autor:in)
  • Gabriele Müller - , Zentrum für evidenzbasierte Gesundheitsversorgung (Autor:in)
  • Heiko Krude - , Charité – Universitätsmedizin Berlin (Autor:in)
  • Reinhard Berner - , Klinik und Poliklinik für Kinder- und Jugendmedizin, UniversitätsCentrum für Seltene Erkrankungen (Autor:in)
  • Min Ae Lee-Kirsch - , Klinik und Poliklinik für Kinder- und Jugendmedizin, UniversitätsCentrum für Seltene Erkrankungen (Autor:in)
  • Fabian Hauck - , Ludwig-Maximilians-Universität München (LMU) (Autor:in)
  • Kerstin Wainwright - , Charité – Universitätsmedizin Berlin (Autor:in)
  • Sylvana Baumgarten - , Charité – Universitätsmedizin Berlin (Autor:in)
  • Janet Atinga - , Ruhr-Universität Bochum (Autor:in)
  • Jens J. Bauer - , Ruhr-Universität Bochum (Autor:in)
  • Eva Manka - , Universität Duisburg-Essen (Autor:in)
  • Julia Körholz - , Klinik und Poliklinik für Kinder- und Jugendmedizin, UniversitätsCentrum für Seltene Erkrankungen (Autor:in)
  • Cordula Kiewert - , Universität Duisburg-Essen (Autor:in)
  • André Heinen - , Klinik und Poliklinik für Kinder- und Jugendmedizin, UniversitätsCentrum für Seltene Erkrankungen (Autor:in)
  • Tanita Kretschmer - , Klinik und Poliklinik für Kinder- und Jugendmedizin, UniversitätsCentrum für Seltene Erkrankungen (Autor:in)
  • Tobias Kurth - , Charité – Universitätsmedizin Berlin (Autor:in)
  • Janna Mittnacht - , Universität Heidelberg (Autor:in)
  • Christoph Schramm - , Universität Hamburg (Autor:in)
  • Christoph Klein - , Ludwig-Maximilians-Universität München (LMU) (Autor:in)
  • Holm Graessner - , Eberhard Karls Universität Tübingen (Autor:in)
  • Olaf Hiort - , Universitätsklinikum Schleswig-Holstein Campus Lübeck (Autor:in)
  • Ania C. Muntau - , Universität Hamburg (Autor:in)
  • Annette Grüters - , Charité – Universitätsmedizin Berlin (Autor:in)
  • Georg F. Hoffmann - , Universität Heidelberg (Autor:in)
  • Daniela Choukair - , Universität Heidelberg (Autor:in)

Abstract

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.

Details

OriginalspracheEnglisch
Aufsatznummer93
Seiten (von - bis)1-9
Seitenumfang9
FachzeitschriftOrphanet journal of rare diseases
Jahrgang18
Ausgabenummer1
PublikationsstatusVeröffentlicht - 25 Apr. 2023
Peer-Review-StatusJa

Externe IDs

PubMed 37098531
Mendeley 52643b92-7e4c-3b8e-98b8-d9c68e269d60
ORCID /0000-0001-6313-4434/work/147143697

Schlagworte

Schlagwörter

  • 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

Bibliotheksschlagworte