Transition for adolescents with a rare disease

  • \(\bf Purpose\) 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. \(\bf Methods\) 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. \(\bf Results\) 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. \(\bf Conclusion\) 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.

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Author:Corinna Oberste-BerghausORCiDGND, Jakob HöppnerORCiDGND, Peter BurgardORCiDGND, Michael Maria SchündelnORCiDGND, Nora MatarGND, Gabriele MüllerORCiDGND, Heiko KrudeGND, Reinhard BernerGND, Min Ae Lee-KirschGND, Fabian HauckORCiDGND, Kerstin WainwrightGND, Sylvana BaumgartenGND, Janet AtingaGND, Jens BauerGND, Eva MankaGND, Julia Christine KörholzGND, Cordula KiewertGND, André HeinenGND, Tanita KretschmerGND, Tobias KurthORCiDGND, Janna MittnachtGND, Christoph SchrammORCiDGND, Christoph KleinGND, Holm GraessnerGND, Olaf HiortGND, Ania MuntauGND, Annette Grüters-KieslichGND, Georg F. HoffmannORCiDGND, Daniela ChoukairORCiDGND
Parent Title (English):Orphanet journal of rare disease
Subtitle (English):results of a nationwide German project
Publisher:BioMed Central
Place of publication:London
Document Type:Article
Date of Publication (online):2024/02/08
Date of first Publication:2023/04/25
Publishing Institution:Ruhr-Universität Bochum, Universitätsbibliothek
Tag:Open Access Fonds
Adolescent health; Empowerment; Health literacy; Pathway; Rare disease; Transition
Issue:Article 93
First Page:93-1
Last Page:93-9
Article Processing Charge funded by the Deutsche Forschungsgemeinschaft (DFG) and the Open Access Publication Fund of Ruhr-Universität Bochum.
Institutes/Facilities:St. Josef-Hospital Bochum, Klinik für Kinder- und Jugendmedizin
St. Josef-Hospital Bochum, Klinik für Kinder- und Jugendmedizin, CeSER - Centrum für Seltene Erkrankungen
Dewey Decimal Classification:Technik, Medizin, angewandte Wissenschaften / Medizin, Gesundheit
open_access (DINI-Set):open_access
Licence (English):License LogoCreative Commons - CC BY 4.0 - Attribution 4.0 International