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Confirmatory validation of the french version of the Duchenne Muscular Dystrophy module of the pediatric quality of life inventory (PedsQL(TM)3.0DMDfv)

Duchenne Muscular Dystrophy (DMD) is a neuromuscular disease that inevitably leads to total loss of autonomy. The new therapeutic strategies aim to both improve survival and optimise quality of life. Evaluating quality of life is nevertheless a major challenge. No DMD-specific quality of life scale...

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Autores principales: Wallach, Elisabeth, Ehlinger, Virginie, Biotteau, Maelle, Walther-Louvier, Ulrike, Péréon, Yann, Vuillerot, Carole, Fontaine, Stephanie, Sabouraud, Pascal, Espil-Taris, Caroline, Cuisset, Jean-Marie, Laugel, Vincent, Baudou, Eloïse, Arnaud, Catherine, Cances, Claude
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10647061/
https://www.ncbi.nlm.nih.gov/pubmed/37968589
http://dx.doi.org/10.1186/s12887-023-04153-4
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author Wallach, Elisabeth
Ehlinger, Virginie
Biotteau, Maelle
Walther-Louvier, Ulrike
Péréon, Yann
Vuillerot, Carole
Fontaine, Stephanie
Sabouraud, Pascal
Espil-Taris, Caroline
Cuisset, Jean-Marie
Laugel, Vincent
Baudou, Eloïse
Arnaud, Catherine
Cances, Claude
author_facet Wallach, Elisabeth
Ehlinger, Virginie
Biotteau, Maelle
Walther-Louvier, Ulrike
Péréon, Yann
Vuillerot, Carole
Fontaine, Stephanie
Sabouraud, Pascal
Espil-Taris, Caroline
Cuisset, Jean-Marie
Laugel, Vincent
Baudou, Eloïse
Arnaud, Catherine
Cances, Claude
author_sort Wallach, Elisabeth
collection PubMed
description Duchenne Muscular Dystrophy (DMD) is a neuromuscular disease that inevitably leads to total loss of autonomy. The new therapeutic strategies aim to both improve survival and optimise quality of life. Evaluating quality of life is nevertheless a major challenge. No DMD-specific quality of life scale to exists in French. We therefore produced a French translation of the English Duchenne Muscular Dystrophy module of the Pediatric Quality of Life Inventory (PedsQL(TM)DMD) following international recommendations. The study objective was to carry out a confirmatory validation of the French version of the PedsQL(TM)DMD for paediatric patients with DMD, using French multicentre descriptive cross-sectional data. The sample consisted of 107 patients. Internal consistency was acceptable for proxy-assessments, with Cronbach's alpha coefficients above 0.70, except for the Treatment dimension. For self-assessments, internal consistency was acceptable only for the Daily Activities dimension. Our results showed poor metric qualities for the French version of the PedsQL(TM)DMD based on a sample of about 100 children, but these results remained consistent with those of the original validation. This confirms the interest of its use in clinical practice.
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spelling pubmed-106470612023-11-15 Confirmatory validation of the french version of the Duchenne Muscular Dystrophy module of the pediatric quality of life inventory (PedsQL(TM)3.0DMDfv) Wallach, Elisabeth Ehlinger, Virginie Biotteau, Maelle Walther-Louvier, Ulrike Péréon, Yann Vuillerot, Carole Fontaine, Stephanie Sabouraud, Pascal Espil-Taris, Caroline Cuisset, Jean-Marie Laugel, Vincent Baudou, Eloïse Arnaud, Catherine Cances, Claude BMC Pediatr Research Duchenne Muscular Dystrophy (DMD) is a neuromuscular disease that inevitably leads to total loss of autonomy. The new therapeutic strategies aim to both improve survival and optimise quality of life. Evaluating quality of life is nevertheless a major challenge. No DMD-specific quality of life scale to exists in French. We therefore produced a French translation of the English Duchenne Muscular Dystrophy module of the Pediatric Quality of Life Inventory (PedsQL(TM)DMD) following international recommendations. The study objective was to carry out a confirmatory validation of the French version of the PedsQL(TM)DMD for paediatric patients with DMD, using French multicentre descriptive cross-sectional data. The sample consisted of 107 patients. Internal consistency was acceptable for proxy-assessments, with Cronbach's alpha coefficients above 0.70, except for the Treatment dimension. For self-assessments, internal consistency was acceptable only for the Daily Activities dimension. Our results showed poor metric qualities for the French version of the PedsQL(TM)DMD based on a sample of about 100 children, but these results remained consistent with those of the original validation. This confirms the interest of its use in clinical practice. BioMed Central 2023-11-15 /pmc/articles/PMC10647061/ /pubmed/37968589 http://dx.doi.org/10.1186/s12887-023-04153-4 Text en © The Author(s) 2023 https://creativecommons.org/licenses/by/4.0/Open Access This 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 Research
Wallach, Elisabeth
Ehlinger, Virginie
Biotteau, Maelle
Walther-Louvier, Ulrike
Péréon, Yann
Vuillerot, Carole
Fontaine, Stephanie
Sabouraud, Pascal
Espil-Taris, Caroline
Cuisset, Jean-Marie
Laugel, Vincent
Baudou, Eloïse
Arnaud, Catherine
Cances, Claude
Confirmatory validation of the french version of the Duchenne Muscular Dystrophy module of the pediatric quality of life inventory (PedsQL(TM)3.0DMDfv)
title Confirmatory validation of the french version of the Duchenne Muscular Dystrophy module of the pediatric quality of life inventory (PedsQL(TM)3.0DMDfv)
title_full Confirmatory validation of the french version of the Duchenne Muscular Dystrophy module of the pediatric quality of life inventory (PedsQL(TM)3.0DMDfv)
title_fullStr Confirmatory validation of the french version of the Duchenne Muscular Dystrophy module of the pediatric quality of life inventory (PedsQL(TM)3.0DMDfv)
title_full_unstemmed Confirmatory validation of the french version of the Duchenne Muscular Dystrophy module of the pediatric quality of life inventory (PedsQL(TM)3.0DMDfv)
title_short Confirmatory validation of the french version of the Duchenne Muscular Dystrophy module of the pediatric quality of life inventory (PedsQL(TM)3.0DMDfv)
title_sort confirmatory validation of the french version of the duchenne muscular dystrophy module of the pediatric quality of life inventory (pedsql(tm)3.0dmdfv)
topic Research
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10647061/
https://www.ncbi.nlm.nih.gov/pubmed/37968589
http://dx.doi.org/10.1186/s12887-023-04153-4
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