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Confirmatory validation of the french version of the Duchenne Muscular Dystrophy module of the pediatric quality of life inventory (PedsQLTM3.0DMDfv).
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.
Afiliação
  • Wallach E; Neuropediatric Department, Toulouse-Purpan University Hospital, Toulouse, France. wallach.a@chu-toulouse.fr.
  • Ehlinger V; UMR 1295 CERPOP, Toulouse University, Inserm, University Toulouse III Paul Sabatier, Toulouse, France.
  • Biotteau M; Neuropediatric Department, Toulouse-Purpan University Hospital, Toulouse, France. maelle.biotteau@inserm.fr.
  • Walther-Louvier U; ToNIC, Toulouse NeuroImaging Center, University of Toulouse, Inserm, UPS, Toulouse, France. maelle.biotteau@inserm.fr.
  • Péréon Y; CHU Montpellier, Service de Neuropédiatrie, Centre de Référence Maladies Neuromusculaires AOC, Montpellier, France.
  • Vuillerot C; Reference Centre for Neuromuscular Diseases AOC, Filnemus, Euro-NMD, Hôtel-Dieu, CHU Nantes, Nantes, France.
  • Fontaine S; Hospices Civils de Lyon, Hôpital Femme-Mère-Enfant, L'Escale, Service de Médecine Physique et de Réadaptation Pédiatrique, Bron, France.
  • Sabouraud P; NeuroMyogen Institute, CNRS UMR 5310 - INSERM U1217, University of Lyon, Lyon, France.
  • Espil-Taris C; Hospices Civils de Lyon, Hôpital Femme-Mère-Enfant, L'Escale, Service de Médecine Physique et de Réadaptation Pédiatrique, Bron, France.
  • Cuisset JM; Department of Paediatrics, French Reference Center for Neuromuscular Diseases, American Memorial Hospital, Reims University Hospital Center, Reims, France.
  • Laugel V; CHU Pellegrin, Service de neuropédiatrie, Centre de Référence Maladies Neuromusculaires AOC, Bordeaux, France.
  • Baudou E; Reference Centre for Neuromuscular Diseases Nord/Est/Ile-de-France, CHU Lille, Lille, France.
  • Arnaud C; Department of Pediatric Neurology, CHU Lille, Lille, France.
  • Cances C; Unité de neuropédiatrie et CIC pédiatrique, Hôpitaux Universitaires de Strasbourg, Strasbourg, France.
BMC Pediatr ; 23(1): 563, 2023 11 15.
Article em En | MEDLINE | ID: mdl-37968589
ABSTRACT
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 (PedsQLTMDMD) following international recommendations. The study objective was to carry out a confirmatory validation of the French version of the PedsQLTMDMD 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 PedsQLTMDMD 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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Texto completo: 1 Base de dados: MEDLINE Assunto principal: Qualidade de Vida / Distrofia Muscular de Duchenne Limite: Child / Humans Idioma: En Ano de publicação: 2023 Tipo de documento: Article

Texto completo: 1 Base de dados: MEDLINE Assunto principal: Qualidade de Vida / Distrofia Muscular de Duchenne Limite: Child / Humans Idioma: En Ano de publicação: 2023 Tipo de documento: Article