English Cross-Cultural Translation and Validation of the Neuromuscular Score: A System for Motor Function Classification in Patients With Neuromuscular Diseases |
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| Authors: | Carole Vuillerot,Katherine G. Meilleur,Minal Jain,Melissa Waite,Tianxia Wu,Melody Linton,Jahannaz Datsgir,Sandra Donkervoort,Meganne E. Leach,Anne Rutkowski,Pascal Rippert,Christine Payan,Jean Iwaz,Dalil Hamroun,Carole Bé rard,Isabelle Poirot,Carsten G. Bö nnemann |
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| Affiliation: | 1. Neuromuscular and Neurogenetic Disorders of Childhood Section, National Institute of Neurological Disorders and Stroke, National Institutes of Health, Bethesda, MD;2. Hospices Civils de Lyon, L''Escale, Pediatric Physical Medicine and Rehabilitation Department, Bron, France;3. Université de Lyon, Lyon, France;4. CNRS UMR 5558, Laboratoire de Biométrie et Biologie Evolutive, Equipe Biostatistique Santé, Pierre-Bénite, France;5. National Institute of Nursing Research, National Institutes of Health, Bethesda, MD;6. Mark O. Hatfield Clinical Research Center, National Institutes of Health, Bethesda, MD;g Children''s National Health System, Washington, DC;h Cure Congenital Muscular Dystrophy and Kaiser Southern California Permanente Medical Group, Los Angeles, CA;i Hospices Civils de Lyon, Pôle Information Médicale Évaluation Recherche, Lyon, France;j Assistance Publique-Hôpitaux de Paris, Hôpital Pitié-Salpétrière, Department of Clinical Pharmacology, Paris, France;k Hospices Civils de Lyon, Service de Biostatistique, Lyon, France;l Centre Hospitalo-Universitaire de Montpellier, Montpellier, France |
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| Abstract: | ![]()
ObjectiveTo develop and validate an English version of the Neuromuscular (NM)-Score, a classification for patients with NM diseases in each of the 3 motor function domains: D1, standing and transfers; D2, axial and proximal motor function; and D3, distal motor function.DesignValidation survey.SettingPatients seen at a medical research center between June and September 2013.ParticipantsConsecutive patients (N=42) aged 5 to 19 years with a confirmed or suspected diagnosis of congenital muscular dystrophy.InterventionsNot applicable.Main Outcome MeasuresAn English version of the NM-Score was developed by a 9-person expert panel that assessed its content validity and semantic equivalence. Its concurrent validity was tested against criterion standards (Brooke Scale, Motor Function Measure [MFM], activity limitations for patients with upper and/or lower limb impairments [ACTIVLIM], Jebsen Test, and myometry measurements). Informant agreement between patient/caregiver (P/C)-reported and medical doctor (MD)-reported NM scores was measured by weighted kappa.ResultsSignificant correlation coefficients were found between NM scores and criterion standards. The highest correlations were found between NM-score D1 and MFM score D1 (ρ=−.944, P<.0001), ACTIVLIM (ρ=−.895, P<.0001), and hip abduction strength by myometry (ρ=−.811, P<.0001). Informant agreement between P/C-reported and MD-reported NM scores was high for D1 (κ=.801; 95% confidence interval [CI], .701–.914) but moderate for D2 (κ=.592; 95% CI, .412–.773) and D3 (κ=.485; 95% CI, .290–.680). Correlation coefficients between the NM scores and the criterion standards did not significantly differ between P/C-reported and MD-reported NM scores.ConclusionsPatients and physicians completed the English NM-Score easily and accurately. The English version is a reliable and valid instrument that can be used in clinical practice and research to describe the functional abilities of patients with NM diseases. |
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| Keywords: | Activities of daily living Disability evaluation Neuromuscular diseases Rehabilitation |
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