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Essen transition model for neuromuscular diseases
BACKGROUND: With the optimization of medical care structures and the rapid progress in the development of new therapeutic methods, an increase in life expectancy is observed in patients with neuromuscular diseases. This leads to an expansion of the phenotypic spectrum, whereby new or previously less...
Autores principales: | , , , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
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BioMed Central
2022
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9442978/ https://www.ncbi.nlm.nih.gov/pubmed/36058951 http://dx.doi.org/10.1186/s42466-022-00206-8 |
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author | Fleischer, Michael Coskun, Bayram Stolte, Benjamin Della-Marina, Adela Kölbel, Heike Lax, Hildegard Nonnemacher, Michael Kleinschnitz, Christoph Schara-Schmidt, Ulrike Hagenacker, Tim |
author_facet | Fleischer, Michael Coskun, Bayram Stolte, Benjamin Della-Marina, Adela Kölbel, Heike Lax, Hildegard Nonnemacher, Michael Kleinschnitz, Christoph Schara-Schmidt, Ulrike Hagenacker, Tim |
author_sort | Fleischer, Michael |
collection | PubMed |
description | BACKGROUND: With the optimization of medical care structures and the rapid progress in the development of new therapeutic methods, an increase in life expectancy is observed in patients with neuromuscular diseases. This leads to an expansion of the phenotypic spectrum, whereby new or previously less relevant disease manifestations in different organ systems gain more importance. The care of adolescents and young adults with neuromuscular diseases, therefore, requires increasingly close interdisciplinary collaboration within neuromuscular centers. RESEARCH QUESTION: How can the transition process from pediatric to adult care be structured so that the individual disciplines are efficiently integrated into the complex treatment and care process, and the patients' quality of life is improved? MATERIAL AND METHODS: A structured transition process was established at the University Hospital in Essen, Germany. Exemplarily, a comparable care concept was developed based on Pompe disease, Duchenne muscular dystrophy, and juvenile myasthenia gravis comprising four elements: (1) With the introduction of cross-department standard operating procedures, the logistical processes, as well as the diagnostic and therapeutic measures, are uniformly coordinated, and the transition process is bindingly defined. (2) To ensure a seamless transition, young patients are seen with their parents during joint consultations before they reach their 17th birthday. This creates an opportunity for patients to get to know the subsequent department structure and build a lasting relationship of trust. (3) A quarterly “transition board” regularly brings together the participating disciplines from pediatric and adult care systems for a case-related interdisciplinary exchange and continuous optimization of the transition process. (4) A cross-department “Transition Database”, in which medical findings and parameters are recorded, was implemented as a common information platform and database. CONCLUSION: The Essen Transition Model aims to close the gap in care for young patients with neuromuscular diseases during the critical transition from pediatric to adult medicine and to create a successful continuation of treatment in adulthood. |
format | Online Article Text |
id | pubmed-9442978 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2022 |
publisher | BioMed Central |
record_format | MEDLINE/PubMed |
spelling | pubmed-94429782022-09-06 Essen transition model for neuromuscular diseases Fleischer, Michael Coskun, Bayram Stolte, Benjamin Della-Marina, Adela Kölbel, Heike Lax, Hildegard Nonnemacher, Michael Kleinschnitz, Christoph Schara-Schmidt, Ulrike Hagenacker, Tim Neurol Res Pract Research Article BACKGROUND: With the optimization of medical care structures and the rapid progress in the development of new therapeutic methods, an increase in life expectancy is observed in patients with neuromuscular diseases. This leads to an expansion of the phenotypic spectrum, whereby new or previously less relevant disease manifestations in different organ systems gain more importance. The care of adolescents and young adults with neuromuscular diseases, therefore, requires increasingly close interdisciplinary collaboration within neuromuscular centers. RESEARCH QUESTION: How can the transition process from pediatric to adult care be structured so that the individual disciplines are efficiently integrated into the complex treatment and care process, and the patients' quality of life is improved? MATERIAL AND METHODS: A structured transition process was established at the University Hospital in Essen, Germany. Exemplarily, a comparable care concept was developed based on Pompe disease, Duchenne muscular dystrophy, and juvenile myasthenia gravis comprising four elements: (1) With the introduction of cross-department standard operating procedures, the logistical processes, as well as the diagnostic and therapeutic measures, are uniformly coordinated, and the transition process is bindingly defined. (2) To ensure a seamless transition, young patients are seen with their parents during joint consultations before they reach their 17th birthday. This creates an opportunity for patients to get to know the subsequent department structure and build a lasting relationship of trust. (3) A quarterly “transition board” regularly brings together the participating disciplines from pediatric and adult care systems for a case-related interdisciplinary exchange and continuous optimization of the transition process. (4) A cross-department “Transition Database”, in which medical findings and parameters are recorded, was implemented as a common information platform and database. CONCLUSION: The Essen Transition Model aims to close the gap in care for young patients with neuromuscular diseases during the critical transition from pediatric to adult medicine and to create a successful continuation of treatment in adulthood. BioMed Central 2022-09-05 /pmc/articles/PMC9442978/ /pubmed/36058951 http://dx.doi.org/10.1186/s42466-022-00206-8 Text en © The Author(s) 2022 https://creativecommons.org/licenses/by/4.0/Open AccessThis article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/) . |
spellingShingle | Research Article Fleischer, Michael Coskun, Bayram Stolte, Benjamin Della-Marina, Adela Kölbel, Heike Lax, Hildegard Nonnemacher, Michael Kleinschnitz, Christoph Schara-Schmidt, Ulrike Hagenacker, Tim Essen transition model for neuromuscular diseases |
title | Essen transition model for neuromuscular diseases |
title_full | Essen transition model for neuromuscular diseases |
title_fullStr | Essen transition model for neuromuscular diseases |
title_full_unstemmed | Essen transition model for neuromuscular diseases |
title_short | Essen transition model for neuromuscular diseases |
title_sort | essen transition model for neuromuscular diseases |
topic | Research Article |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9442978/ https://www.ncbi.nlm.nih.gov/pubmed/36058951 http://dx.doi.org/10.1186/s42466-022-00206-8 |
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