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, Vol. 18, No. 1, 25.04.2023, p. 93.Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review
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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 -