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

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Transition for adolescents with a rare disease: results of a nationwide German project. / Grasemann, Corinna; Höppner, Jakob; Burgard, Peter; Schündeln, Michael M; Matar, Nora; Müller, Gabriele; Krude, Heiko; Berner, Reinhard; Lee-Kirsch, Min Ae; Hauck, Fabian; Wainwright, Kerstin; Baumgarten, Sylvana; Atinga, Janet; Bauer, Jens J; Manka, Eva; Körholz, Julia; Kiewert, Cordula; Heinen, André; Kretschmer, Tanita; Kurth, Tobias; Mittnacht, Janna; Schramm, Christoph; Klein, Christoph; Graessner, Holm; Hiort, Olaf; Muntau, Ania C; Grüters, Annette; Hoffmann, Georg F; Choukair, Daniela.

in: ORPHANET J RARE DIS, Jahrgang 18, Nr. 1, 25.04.2023, S. 93.

Publikationen: SCORING: Beitrag in Fachzeitschrift/Zeitung › SCORING: Zeitschriftenaufsatz › Forschung › Begutachtung

Harvard

Grasemann, C, Höppner, J, Burgard, P, Schündeln, MM, Matar, N, Müller, G, Krude, H, Berner, R, Lee-Kirsch, MA, Hauck, F, Wainwright, K, Baumgarten, S, Atinga, J, Bauer, JJ, Manka, E, Körholz, J, Kiewert, C, Heinen, A, Kretschmer, T, Kurth, T, Mittnacht, J, Schramm, C, Klein, C, Graessner, H, Hiort, O, Muntau, AC, Grüters, A, Hoffmann, GF & Choukair, D 2023, 'Transition for adolescents with a rare disease: results of a nationwide German project', ORPHANET J RARE DIS, Jg. 18, Nr. 1, S. 93. https://doi.org/10.1186/s13023-023-02698-2

APA

Grasemann, C., Höppner, J., Burgard, P., Schündeln, M. M., Matar, N., Müller, G., Krude, H., Berner, R., Lee-Kirsch, M. A., Hauck, F., Wainwright, K., Baumgarten, S., Atinga, J., Bauer, J. J., Manka, E., Körholz, J., Kiewert, C., Heinen, A., Kretschmer, T., ... Choukair, D. (2023). Transition for adolescents with a rare disease: results of a nationwide German project. ORPHANET J RARE DIS, 18(1), 93. https://doi.org/10.1186/s13023-023-02698-2

Vancouver

Grasemann C, Höppner J, Burgard P, Schündeln MM, Matar N, Müller G et al. Transition for adolescents with a rare disease: results of a nationwide German project. ORPHANET J RARE DIS. 2023 Apr 25;18(1):93. https://doi.org/10.1186/s13023-023-02698-2

Bibtex

@article{68e0493ff2c64b2b8a48f8c7514e57ab,
title = "Transition for adolescents with a rare disease: results of a nationwide German project",
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.",
keywords = "Humans, Adolescent, Child, Rare Diseases, Chronic Disease, Patient Participation, Germany",
author = "Corinna Grasemann and Jakob H{\"o}ppner and Peter Burgard and Sch{\"u}ndeln, {Michael M} and Nora Matar and Gabriele M{\"u}ller and Heiko Krude and Reinhard Berner and Lee-Kirsch, {Min Ae} and Fabian Hauck and Kerstin Wainwright and Sylvana Baumgarten and Janet Atinga and Bauer, {Jens J} and Eva Manka and Julia K{\"o}rholz and Cordula Kiewert and Andr{\'e} Heinen and Tanita Kretschmer and Tobias Kurth and Janna Mittnacht and Christoph Schramm and Christoph Klein and Holm Graessner and Olaf Hiort and Muntau, {Ania C} and Annette Gr{\"u}ters and Hoffmann, {Georg F} and Daniela Choukair",
note = "{\textcopyright} 2023. The Author(s).",
year = "2023",
month = apr,
day = "25",
doi = "10.1186/s13023-023-02698-2",
language = "English",
volume = "18",
pages = "93",
journal = "ORPHANET J RARE DIS",
issn = "1750-1172",
publisher = "BioMed Central Ltd.",
number = "1",

}

RIS

TY - JOUR

T1 - Transition for adolescents with a rare disease: results of a nationwide German project

AU - Grasemann, Corinna

AU - Höppner, Jakob

AU - Burgard, Peter

AU - Schündeln, Michael M

AU - Matar, Nora

AU - Müller, Gabriele

AU - Krude, Heiko

AU - Berner, Reinhard

AU - Lee-Kirsch, Min Ae

AU - Hauck, Fabian

AU - Wainwright, Kerstin

AU - Baumgarten, Sylvana

AU - Atinga, Janet

AU - Bauer, Jens J

AU - Manka, Eva

AU - Körholz, Julia

AU - Kiewert, Cordula

AU - Heinen, André

AU - Kretschmer, Tanita

AU - Kurth, Tobias

AU - Mittnacht, Janna

AU - Schramm, Christoph

AU - Klein, Christoph

AU - Graessner, Holm

AU - Hiort, Olaf

AU - Muntau, Ania C

AU - Grüters, Annette

AU - Hoffmann, Georg F

AU - Choukair, Daniela

N1 - © 2023. The Author(s).

PY - 2023/4/25

Y1 - 2023/4/25

N2 - 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.

AB - 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.

KW - Humans

KW - Adolescent

KW - Child

KW - Rare Diseases

KW - Chronic Disease

KW - Patient Participation

KW - Germany

U2 - 10.1186/s13023-023-02698-2

DO - 10.1186/s13023-023-02698-2

M3 - SCORING: Journal article

C2 - 37098531

VL - 18

SP - 93

JO - ORPHANET J RARE DIS

JF - ORPHANET J RARE DIS

SN - 1750-1172

IS - 1

ER -