Transition for adolescents with a rare disease: results of a nationwide German project
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-appro...
Saved in:
| Main Authors: | , , , , , , , , , , , , , , , , , , , , , , , , , , , , |
|---|---|
| Format: | Article (Journal) |
| Language: | English |
| Published: |
25 April 2023
|
| In: |
Orphanet journal of rare diseases
Year: 2023, Volume: 18, Pages: 1-9 |
| ISSN: | 1750-1172 |
| DOI: | 10.1186/s13023-023-02698-2 |
| Online Access: | Verlag, kostenfrei, Volltext: https://doi.org/10.1186/s13023-023-02698-2 |
| Author Notes: | Corinna Grasemann, Jakob Höppner, Peter Burgard, Michael M. Schündeln, Nora Matar, Gabriele Müller, Heiko Krude, Reinhard Berner, Min Ae Lee-Kirsch, Fabian Hauck, Kerstin Wainwright, Sylvana Baumgarten, Janet Atinga, Jens J. Bauer, Eva Manka, Julia Körholz, Cordula Kiewert, André Heinen, Tanita Kretschmer, Tobias Kurth, Janna Mittnacht, Christoph Schramm, Christoph Klein, Holm Graessner, Olaf Hiort, Ania C. Muntau, Annette Grüters, Georg F. Hoffmann and Daniela Choukair |
MARC
| LEADER | 00000caa a2200000 c 4500 | ||
|---|---|---|---|
| 001 | 1849785635 | ||
| 003 | DE-627 | ||
| 005 | 20250113003625.0 | ||
| 007 | cr uuu---uuuuu | ||
| 008 | 230615s2023 xx |||||o 00| ||eng c | ||
| 024 | 7 | |a 10.1186/s13023-023-02698-2 |2 doi | |
| 035 | |a (DE-627)1849785635 | ||
| 035 | |a (DE-599)KXP1849785635 | ||
| 035 | |a (OCoLC)1389529647 | ||
| 040 | |a DE-627 |b ger |c DE-627 |e rda | ||
| 041 | |a eng | ||
| 084 | |a 33 |2 sdnb | ||
| 100 | 1 | |a Oberste-Berghaus, Corinna |d 1970- |e VerfasserIn |0 (DE-588)118195654 |0 (DE-627)694753866 |0 (DE-576)291763480 |4 aut | |
| 245 | 1 | 0 | |a Transition for adolescents with a rare disease |b results of a nationwide German project |c Corinna Grasemann, Jakob Höppner, Peter Burgard, Michael M. Schündeln, Nora Matar, Gabriele Müller, Heiko Krude, Reinhard Berner, Min Ae Lee-Kirsch, Fabian Hauck, Kerstin Wainwright, Sylvana Baumgarten, Janet Atinga, Jens J. Bauer, Eva Manka, Julia Körholz, Cordula Kiewert, André Heinen, Tanita Kretschmer, Tobias Kurth, Janna Mittnacht, Christoph Schramm, Christoph Klein, Holm Graessner, Olaf Hiort, Ania C. Muntau, Annette Grüters, Georg F. Hoffmann and Daniela Choukair |
| 264 | 1 | |c 25 April 2023 | |
| 300 | |a 9 | ||
| 336 | |a Text |b txt |2 rdacontent | ||
| 337 | |a Computermedien |b c |2 rdamedia | ||
| 338 | |a Online-Ressource |b cr |2 rdacarrier | ||
| 500 | |a Gesehen am 15.06.2023 | ||
| 520 | |a 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. | ||
| 650 | 4 | |a Adolescent health | |
| 650 | 4 | |a Empowerment | |
| 650 | 4 | |a Health literacy | |
| 650 | 4 | |a Pathway | |
| 650 | 4 | |a Rare disease | |
| 650 | 4 | |a Transition | |
| 700 | 1 | |a Höppner, Jakob |e VerfasserIn |4 aut | |
| 700 | 1 | |a Burgard, Peter |e VerfasserIn |0 (DE-588)1050864808 |0 (DE-627)785218416 |0 (DE-576)160485630 |4 aut | |
| 700 | 1 | |8 1\p |a Schündeln, Michael Maria |d 1972- |e VerfasserIn |0 (DE-588)123087341 |0 (DE-627)706155955 |0 (DE-576)293549729 |4 aut | |
| 700 | 1 | |a Matar, Nora |e VerfasserIn |4 aut | |
| 700 | 1 | |8 2\p |a Müller, Gabriele |e VerfasserIn |0 (DE-588)1318707919 |0 (DE-627)1880358697 |4 aut | |
| 700 | 1 | |a Krude, Heiko |e VerfasserIn |4 aut | |
| 700 | 1 | |a Berner, Reinhard |e VerfasserIn |4 aut | |
| 700 | 1 | |a Lee-Kirsch, Min Ae |e VerfasserIn |4 aut | |
| 700 | 1 | |8 3\p |a Hauck, Fabian |d 1976- |e VerfasserIn |0 (DE-588)130658111 |0 (DE-627)505292696 |0 (DE-576)298326566 |4 aut | |
| 700 | 1 | |a Wainwright, Kerstin |e VerfasserIn |4 aut | |
| 700 | 1 | |a Baumgarten, Sylvana |e VerfasserIn |4 aut | |
| 700 | 1 | |a Atinga, Janet |e VerfasserIn |4 aut | |
| 700 | 1 | |a Bauer, Jens J. |e VerfasserIn |4 aut | |
| 700 | 1 | |a Manka, Eva |e VerfasserIn |4 aut | |
| 700 | 1 | |a Körholz, Julia |e VerfasserIn |4 aut | |
| 700 | 1 | |a Kiewert, Cordula |e VerfasserIn |4 aut | |
| 700 | 1 | |a Heinen, André |e VerfasserIn |4 aut | |
| 700 | 1 | |a Kretschmer, Tanita |e VerfasserIn |4 aut | |
| 700 | 1 | |8 4\p |a Kurth, Tobias |d 1968- |e VerfasserIn |0 (DE-588)120323095 |0 (DE-627)696568810 |0 (DE-576)178624012 |4 aut | |
| 700 | 1 | |a Mittnacht, Janna |d 1974- |e VerfasserIn |0 (DE-588)131507184 |0 (DE-627)510156304 |0 (DE-576)252750918 |4 aut | |
| 700 | 1 | |a Schramm, Christoph |e VerfasserIn |4 aut | |
| 700 | 1 | |a Klein, Christoph |e VerfasserIn |4 aut | |
| 700 | 1 | |a Graessner, Holm |e VerfasserIn |4 aut | |
| 700 | 1 | |a Hiort, Olaf |e VerfasserIn |4 aut | |
| 700 | 1 | |a Muntau, Ania C. |e VerfasserIn |4 aut | |
| 700 | 1 | |a Grüters, Annette |e VerfasserIn |4 aut | |
| 700 | 1 | |a Hoffmann, Georg F. |d 1957- |e VerfasserIn |0 (DE-588)115652868 |0 (DE-627)077386116 |0 (DE-576)261230042 |4 aut | |
| 700 | 1 | |a Choukair, Daniela |d 1972- |e VerfasserIn |0 (DE-588)120713381 |0 (DE-627)704941848 |0 (DE-576)292352816 |4 aut | |
| 773 | 0 | 8 | |i Enthalten in |t Orphanet journal of rare diseases |d London : BioMed Central, 2006 |g 18(2023) vom: Apr., Artikel-ID 93, Seite 1-9 |h Online-Ressource |w (DE-627)50900637X |w (DE-600)2225857-7 |w (DE-576)260614424 |x 1750-1172 |7 nnas |a Transition for adolescents with a rare disease results of a nationwide German project |
| 773 | 1 | 8 | |g volume:18 |g year:2023 |g month:04 |g elocationid:93 |g pages:1-9 |g extent:9 |a Transition for adolescents with a rare disease results of a nationwide German project |
| 856 | 4 | 0 | |u https://doi.org/10.1186/s13023-023-02698-2 |x Verlag |x Resolving-System |z kostenfrei |3 Volltext |
| 883 | |8 1\p |a cgwrk |d 20241001 |q DE-101 |u https://d-nb.info/provenance/plan#cgwrk | ||
| 883 | |8 2\p |a cgwrk |d 20241001 |q DE-101 |u https://d-nb.info/provenance/plan#cgwrk | ||
| 883 | |8 3\p |a cgwrk |d 20241001 |q DE-101 |u https://d-nb.info/provenance/plan#cgwrk | ||
| 883 | |8 4\p |a cgwrk |d 20241001 |q DE-101 |u https://d-nb.info/provenance/plan#cgwrk | ||
| 951 | |a AR | ||
| 992 | |a 20230615 | ||
| 993 | |a Article | ||
| 994 | |a 2023 | ||
| 998 | |g 120713381 |a Choukair, Daniela |m 120713381:Choukair, Daniela |d 910000 |d 910500 |e 910000PC120713381 |e 910500PC120713381 |k 0/910000/ |k 1/910000/910500/ |p 29 |y j | ||
| 998 | |g 115652868 |a Hoffmann, Georg F. |m 115652868:Hoffmann, Georg F. |d 910000 |d 910500 |e 910000PH115652868 |e 910500PH115652868 |k 0/910000/ |k 1/910000/910500/ |p 28 | ||
| 998 | |g 131507184 |a Mittnacht, Janna |m 131507184:Mittnacht, Janna |d 50000 |e 50000PM131507184 |k 0/50000/ |p 21 | ||
| 998 | |g 1050864808 |a Burgard, Peter |m 1050864808:Burgard, Peter |d 50000 |e 50000PB1050864808 |k 0/50000/ |p 3 | ||
| 999 | |a KXP-PPN1849785635 |e 4338711884 | ||
| BIB | |a Y | ||
| SER | |a journal | ||
| JSO | |a {"type":{"bibl":"article-journal","media":"Online-Ressource"},"title":[{"title_sort":"Transition for adolescents with a rare disease","subtitle":"results of a nationwide German project","title":"Transition for adolescents with a rare disease"}],"physDesc":[{"extent":"9 S."}],"id":{"doi":["10.1186/s13023-023-02698-2"],"eki":["1849785635"]},"relHost":[{"language":["eng"],"part":{"year":"2023","volume":"18","pages":"1-9","extent":"9","text":"18(2023) vom: Apr., Artikel-ID 93, Seite 1-9"},"pubHistory":["1.2006 -"],"note":["Gesehen am 01.09.10"],"disp":"Transition for adolescents with a rare disease results of a nationwide German projectOrphanet journal of rare diseases","type":{"bibl":"periodical","media":"Online-Ressource"},"recId":"50900637X","title":[{"title_sort":"Orphanet journal of rare diseases","title":"Orphanet journal of rare diseases","subtitle":"OJRD"}],"id":{"zdb":["2225857-7"],"eki":["50900637X"],"issn":["1750-1172"]},"physDesc":[{"extent":"Online-Ressource"}],"origin":[{"dateIssuedDisp":"2006-","publisher":"BioMed Central","publisherPlace":"London","dateIssuedKey":"2006"}]}],"origin":[{"dateIssuedKey":"2023","dateIssuedDisp":"25 April 2023"}],"language":["eng"],"name":{"displayForm":["Corinna Grasemann, Jakob Höppner, Peter Burgard, Michael M. Schündeln, Nora Matar, Gabriele Müller, Heiko Krude, Reinhard Berner, Min Ae Lee-Kirsch, Fabian Hauck, Kerstin Wainwright, Sylvana Baumgarten, Janet Atinga, Jens J. Bauer, Eva Manka, Julia Körholz, Cordula Kiewert, André Heinen, Tanita Kretschmer, Tobias Kurth, Janna Mittnacht, Christoph Schramm, Christoph Klein, Holm Graessner, Olaf Hiort, Ania C. Muntau, Annette Grüters, Georg F. Hoffmann and Daniela Choukair"]},"recId":"1849785635","person":[{"role":"aut","family":"Oberste-Berghaus","display":"Oberste-Berghaus, Corinna","given":"Corinna"},{"family":"Höppner","role":"aut","display":"Höppner, Jakob","given":"Jakob"},{"display":"Burgard, Peter","given":"Peter","family":"Burgard","role":"aut"},{"given":"Michael Maria","display":"Schündeln, Michael Maria","role":"aut","family":"Schündeln"},{"role":"aut","family":"Matar","display":"Matar, Nora","given":"Nora"},{"display":"Müller, Gabriele","given":"Gabriele","role":"aut","family":"Müller"},{"family":"Krude","role":"aut","given":"Heiko","display":"Krude, Heiko"},{"given":"Reinhard","display":"Berner, Reinhard","role":"aut","family":"Berner"},{"family":"Lee-Kirsch","role":"aut","display":"Lee-Kirsch, Min Ae","given":"Min Ae"},{"display":"Hauck, Fabian","given":"Fabian","family":"Hauck","role":"aut"},{"role":"aut","family":"Wainwright","given":"Kerstin","display":"Wainwright, Kerstin"},{"given":"Sylvana","display":"Baumgarten, Sylvana","family":"Baumgarten","role":"aut"},{"family":"Atinga","role":"aut","display":"Atinga, Janet","given":"Janet"},{"display":"Bauer, Jens J.","given":"Jens J.","family":"Bauer","role":"aut"},{"given":"Eva","display":"Manka, Eva","family":"Manka","role":"aut"},{"role":"aut","family":"Körholz","display":"Körholz, Julia","given":"Julia"},{"display":"Kiewert, Cordula","given":"Cordula","family":"Kiewert","role":"aut"},{"display":"Heinen, André","given":"André","role":"aut","family":"Heinen"},{"display":"Kretschmer, Tanita","given":"Tanita","family":"Kretschmer","role":"aut"},{"role":"aut","family":"Kurth","given":"Tobias","display":"Kurth, Tobias"},{"display":"Mittnacht, Janna","given":"Janna","family":"Mittnacht","role":"aut"},{"display":"Schramm, Christoph","given":"Christoph","role":"aut","family":"Schramm"},{"given":"Christoph","display":"Klein, Christoph","role":"aut","family":"Klein"},{"family":"Graessner","role":"aut","given":"Holm","display":"Graessner, Holm"},{"given":"Olaf","display":"Hiort, Olaf","family":"Hiort","role":"aut"},{"given":"Ania C.","display":"Muntau, Ania C.","role":"aut","family":"Muntau"},{"family":"Grüters","role":"aut","given":"Annette","display":"Grüters, Annette"},{"display":"Hoffmann, Georg F.","given":"Georg F.","family":"Hoffmann","role":"aut"},{"given":"Daniela","display":"Choukair, Daniela","family":"Choukair","role":"aut"}],"note":["Gesehen am 15.06.2023"]} | ||
| SRT | |a OBERSTEBERTRANSITION2520 | ||