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Neuromuscular disorders and transition from pediatric to adult care in a multidisciplinary perspective: a narrative review of the scientific evidence and current debate
OBJECTIVE: Standards of care and new genetic and molecular therapies have contributed to increasing life expectancy of patients with neuromuscular diseases (NMDs). This review presents the clinical evidence for an adequate transition from pediatric to adult care in patients with NMDs considering bot...
Autores principales: | , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
Pacini Editore Srl
2022
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9896595/ https://www.ncbi.nlm.nih.gov/pubmed/36793653 http://dx.doi.org/10.36185/2532-1900-083 |
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author | Accogli, Giuseppe Ferrante, Camilla Fanizza, Isabella Oliva, Maria Carmela Gallo, Ivana De Rinaldis, Marta Trabacca, Antonio |
author_facet | Accogli, Giuseppe Ferrante, Camilla Fanizza, Isabella Oliva, Maria Carmela Gallo, Ivana De Rinaldis, Marta Trabacca, Antonio |
author_sort | Accogli, Giuseppe |
collection | PubMed |
description | OBJECTIVE: Standards of care and new genetic and molecular therapies have contributed to increasing life expectancy of patients with neuromuscular diseases (NMDs). This review presents the clinical evidence for an adequate transition from pediatric to adult care in patients with NMDs considering both physical and psychosocial aspects and attempts at identifying a general pattern of transition in the literature that can be used for all patients with NMDs. METHOD: A search was performed on PubMed, Embase and Scopus using generic terms that could be referred to the transition construct specifically related to NMDs. A narrative approach was used to summarise the available literature. RESULTS: Our review shows that few or no studies explored the transition process from pediatric to adult care in neuromuscular diseases and tried to identify a general pattern of transition applicable to all NMDs. CONCLUSIONS: A transition process taking into consideration physical, psychological, social needs of patient and caregiver could produce positive outcomes. However, there is still no unanimous agreement in the literature on what it consists of and how to achieve an optimal and effective transition. |
format | Online Article Text |
id | pubmed-9896595 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2022 |
publisher | Pacini Editore Srl |
record_format | MEDLINE/PubMed |
spelling | pubmed-98965952023-02-14 Neuromuscular disorders and transition from pediatric to adult care in a multidisciplinary perspective: a narrative review of the scientific evidence and current debate Accogli, Giuseppe Ferrante, Camilla Fanizza, Isabella Oliva, Maria Carmela Gallo, Ivana De Rinaldis, Marta Trabacca, Antonio Acta Myol Original Article OBJECTIVE: Standards of care and new genetic and molecular therapies have contributed to increasing life expectancy of patients with neuromuscular diseases (NMDs). This review presents the clinical evidence for an adequate transition from pediatric to adult care in patients with NMDs considering both physical and psychosocial aspects and attempts at identifying a general pattern of transition in the literature that can be used for all patients with NMDs. METHOD: A search was performed on PubMed, Embase and Scopus using generic terms that could be referred to the transition construct specifically related to NMDs. A narrative approach was used to summarise the available literature. RESULTS: Our review shows that few or no studies explored the transition process from pediatric to adult care in neuromuscular diseases and tried to identify a general pattern of transition applicable to all NMDs. CONCLUSIONS: A transition process taking into consideration physical, psychological, social needs of patient and caregiver could produce positive outcomes. However, there is still no unanimous agreement in the literature on what it consists of and how to achieve an optimal and effective transition. Pacini Editore Srl 2022-12-31 /pmc/articles/PMC9896595/ /pubmed/36793653 http://dx.doi.org/10.36185/2532-1900-083 Text en ©2022 Gaetano Conte Academy - Mediterranean Society of Myology, Naples, Italy https://creativecommons.org/licenses/by-nc-nd/4.0/This is an open access article distributed in accordance with the CC-BY-NC-ND (Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International) license. The article can be used by giving appropriate credit and mentioning the license, but only for non-commercial purposes and only in the original version. For further information: https://creativecommons.org/licenses/by-nc-nd/4.0/deed.en |
spellingShingle | Original Article Accogli, Giuseppe Ferrante, Camilla Fanizza, Isabella Oliva, Maria Carmela Gallo, Ivana De Rinaldis, Marta Trabacca, Antonio Neuromuscular disorders and transition from pediatric to adult care in a multidisciplinary perspective: a narrative review of the scientific evidence and current debate |
title | Neuromuscular disorders and transition from pediatric to adult care in a multidisciplinary perspective: a narrative review of the scientific evidence and current debate |
title_full | Neuromuscular disorders and transition from pediatric to adult care in a multidisciplinary perspective: a narrative review of the scientific evidence and current debate |
title_fullStr | Neuromuscular disorders and transition from pediatric to adult care in a multidisciplinary perspective: a narrative review of the scientific evidence and current debate |
title_full_unstemmed | Neuromuscular disorders and transition from pediatric to adult care in a multidisciplinary perspective: a narrative review of the scientific evidence and current debate |
title_short | Neuromuscular disorders and transition from pediatric to adult care in a multidisciplinary perspective: a narrative review of the scientific evidence and current debate |
title_sort | neuromuscular disorders and transition from pediatric to adult care in a multidisciplinary perspective: a narrative review of the scientific evidence and current debate |
topic | Original Article |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9896595/ https://www.ncbi.nlm.nih.gov/pubmed/36793653 http://dx.doi.org/10.36185/2532-1900-083 |
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