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Physiotherapy for epidermolysis bullosa: clinical practice guidelines

Epidermolysis bullosa (EB) is characterized by skin fragility with blister formation occurring spontaneously or following minor trauma such as gentle pressure or friction. Current physiotherapy practice is based on anecdotal care, clinical expertise and creative problem solving with caregivers and i...

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Autores principales: Weisman, Amy, Chan, Jennifer M., LaPointe, Chantal, Sjoholm, Kaye, Steinau, Kristy, Artus, Kaycie, Widhiati, Suci, Bodan, Rebecca, Wood, Michelle, Salas-Alanis, Julio C., Rocha, Anna Carolina, Faitli, Beata, Khuu, Phuong
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8481321/
https://www.ncbi.nlm.nih.gov/pubmed/34593011
http://dx.doi.org/10.1186/s13023-021-01997-w
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author Weisman, Amy
Chan, Jennifer M.
LaPointe, Chantal
Sjoholm, Kaye
Steinau, Kristy
Artus, Kaycie
Widhiati, Suci
Bodan, Rebecca
Wood, Michelle
Salas-Alanis, Julio C.
Rocha, Anna Carolina
Faitli, Beata
Khuu, Phuong
author_facet Weisman, Amy
Chan, Jennifer M.
LaPointe, Chantal
Sjoholm, Kaye
Steinau, Kristy
Artus, Kaycie
Widhiati, Suci
Bodan, Rebecca
Wood, Michelle
Salas-Alanis, Julio C.
Rocha, Anna Carolina
Faitli, Beata
Khuu, Phuong
author_sort Weisman, Amy
collection PubMed
description Epidermolysis bullosa (EB) is characterized by skin fragility with blister formation occurring spontaneously or following minor trauma such as gentle pressure or friction. Current physiotherapy practice is based on anecdotal care, clinical expertise and creative problem solving with caregivers and individuals with EB. Evidence based intervention is needed to establish a foundation of knowledge and to guide international practitioners to create and improve standards of care to effectively work with individuals living with EB. This clinical practice guideline (CPG) was created for the purpose of providing evidence based interventions and best clinical practices for the physiotherapy management of individuals with EB. A survey was conducted within the EB community and six outcomes were identified as a priority to address in physiotherapy management, including (1) attaining developmental motor milestones, (2) identifying safe and functional mobility in the natural environment, (3) encouraging ambulation endurance, (4) supporting safe ability to bear weight, (5) improving access to physiotherapy services, and (6) optimizing interaction with the community. A systematic literature review was conducted and articles were critically analyzed by an international panel consisting of thirteen members: healthcare professionals (including physiotherapist, doctors, and occupational therapist), caregivers, and individuals with EB. Recommendations were formulated from evidence and panel consensus. An external panel of twelve were invited to improve the quality and gather feedback on draft manuscript and recommendations. This CPG describes the development of recommendations for physiotherapy management including several best practice interventions. This guideline lays the foundational work for physiotherapist throughout the world to provide high quality services while improving and maintaining functional mobility and independence within the EB community. The CPG outlines limitations in the evidence available and possible future research needed to improve physiotherapy practice. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s13023-021-01997-w.
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spelling pubmed-84813212021-09-30 Physiotherapy for epidermolysis bullosa: clinical practice guidelines Weisman, Amy Chan, Jennifer M. LaPointe, Chantal Sjoholm, Kaye Steinau, Kristy Artus, Kaycie Widhiati, Suci Bodan, Rebecca Wood, Michelle Salas-Alanis, Julio C. Rocha, Anna Carolina Faitli, Beata Khuu, Phuong Orphanet J Rare Dis Review Epidermolysis bullosa (EB) is characterized by skin fragility with blister formation occurring spontaneously or following minor trauma such as gentle pressure or friction. Current physiotherapy practice is based on anecdotal care, clinical expertise and creative problem solving with caregivers and individuals with EB. Evidence based intervention is needed to establish a foundation of knowledge and to guide international practitioners to create and improve standards of care to effectively work with individuals living with EB. This clinical practice guideline (CPG) was created for the purpose of providing evidence based interventions and best clinical practices for the physiotherapy management of individuals with EB. A survey was conducted within the EB community and six outcomes were identified as a priority to address in physiotherapy management, including (1) attaining developmental motor milestones, (2) identifying safe and functional mobility in the natural environment, (3) encouraging ambulation endurance, (4) supporting safe ability to bear weight, (5) improving access to physiotherapy services, and (6) optimizing interaction with the community. A systematic literature review was conducted and articles were critically analyzed by an international panel consisting of thirteen members: healthcare professionals (including physiotherapist, doctors, and occupational therapist), caregivers, and individuals with EB. Recommendations were formulated from evidence and panel consensus. An external panel of twelve were invited to improve the quality and gather feedback on draft manuscript and recommendations. This CPG describes the development of recommendations for physiotherapy management including several best practice interventions. This guideline lays the foundational work for physiotherapist throughout the world to provide high quality services while improving and maintaining functional mobility and independence within the EB community. The CPG outlines limitations in the evidence available and possible future research needed to improve physiotherapy practice. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s13023-021-01997-w. BioMed Central 2021-09-30 /pmc/articles/PMC8481321/ /pubmed/34593011 http://dx.doi.org/10.1186/s13023-021-01997-w Text en © The Author(s) 2021 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/) . The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/ (https://creativecommons.org/publicdomain/zero/1.0/) ) applies to the data made available in this article, unless otherwise stated in a credit line to the data.
spellingShingle Review
Weisman, Amy
Chan, Jennifer M.
LaPointe, Chantal
Sjoholm, Kaye
Steinau, Kristy
Artus, Kaycie
Widhiati, Suci
Bodan, Rebecca
Wood, Michelle
Salas-Alanis, Julio C.
Rocha, Anna Carolina
Faitli, Beata
Khuu, Phuong
Physiotherapy for epidermolysis bullosa: clinical practice guidelines
title Physiotherapy for epidermolysis bullosa: clinical practice guidelines
title_full Physiotherapy for epidermolysis bullosa: clinical practice guidelines
title_fullStr Physiotherapy for epidermolysis bullosa: clinical practice guidelines
title_full_unstemmed Physiotherapy for epidermolysis bullosa: clinical practice guidelines
title_short Physiotherapy for epidermolysis bullosa: clinical practice guidelines
title_sort physiotherapy for epidermolysis bullosa: clinical practice guidelines
topic Review
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8481321/
https://www.ncbi.nlm.nih.gov/pubmed/34593011
http://dx.doi.org/10.1186/s13023-021-01997-w
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