title: English cross-cultural translation and validation of the neuromuscular score: a system for motor function classification in patients with neuromuscular diseases.
abstract: OBJECTIVE
  To 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.
  
  
  METHODS
  Validation survey.
  
  
  METHODS
  Patients seen at a medical research center between June and September 2013.
  
  
  METHODS
  Consecutive patients (N=42) aged 5 to 19 years with a confirmed or suspected diagnosis of congenital muscular dystrophy.
  
  
  METHODS
  Not applicable.
  
  
  METHODS
  An 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.
  
  
  RESULTS
  Significant 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.
  
  
  CONCLUSIONS
  Patients 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.
authors.affiliation: Neuromuscular and Neurogenetic Disorders of Childhood Section, National Institute of Neurological Disorders and Stroke, National Institutes of Health, Bethesda, MD; Hospices Civils de Lyon, L'Escale, Pediatric Physical Medicine and Rehabilitation Department, Bron, France; Université de Lyon, Lyon, France; CNRS UMR 5558, Laboratoire de Biométrie et Biologie Evolutive, Equipe Biostatistique Santé, Pierre-Bénite, France. Electronic address: carole.vuillerot@chu-lyon.fr.
authors.forename: Carole
authors.initials: C
authors.lastname: Vuillerot
authors.affiliation: National Institute of Nursing Research, National Institutes of Health, Bethesda, MD.
authors.forename: Katherine G
authors.initials: KG
authors.lastname: Meilleur
authors.affiliation: Mark O. Hatfield Clinical Research Center, National Institutes of Health, Bethesda, MD.
authors.forename: Minal
authors.initials: M
authors.lastname: Jain
authors.affiliation: Mark O. Hatfield Clinical Research Center, National Institutes of Health, Bethesda, MD.
authors.forename: Melissa
authors.initials: M
authors.lastname: Waite
authors.affiliation: Neuromuscular and Neurogenetic Disorders of Childhood Section, National Institute of Neurological Disorders and Stroke, National Institutes of Health, Bethesda, MD.
authors.forename: Tianxia
authors.initials: T
authors.lastname: Wu
authors.affiliation: National Institute of Nursing Research, National Institutes of Health, Bethesda, MD.
authors.forename: Melody
authors.initials: M
authors.lastname: Linton
authors.affiliation: Neuromuscular and Neurogenetic Disorders of Childhood Section, National Institute of Neurological Disorders and Stroke, National Institutes of Health, Bethesda, MD.
authors.forename: Jahannaz
authors.initials: J
authors.lastname: Datsgir
authors.affiliation: Neuromuscular and Neurogenetic Disorders of Childhood Section, National Institute of Neurological Disorders and Stroke, National Institutes of Health, Bethesda, MD.
authors.forename: Sandra
authors.initials: S
authors.lastname: Donkervoort
authors.affiliation: Neuromuscular and Neurogenetic Disorders of Childhood Section, National Institute of Neurological Disorders and Stroke, National Institutes of Health, Bethesda, MD; Children's National Health System, Washington, DC.
authors.forename: Meganne E
authors.initials: ME
authors.lastname: Leach
authors.affiliation: Cure Congenital Muscular Dystrophy and Kaiser Southern California Permanente Medical Group, Los Angeles, CA.
authors.forename: Anne
authors.initials: A
authors.lastname: Rutkowski
authors.affiliation: Hospices Civils de Lyon, L'Escale, Pediatric Physical Medicine and Rehabilitation Department, Bron, France; Hospices Civils de Lyon, Pôle Information Médicale Évaluation Recherche, Lyon, France.
authors.forename: Pascal
authors.initials: P
authors.lastname: Rippert
authors.affiliation: Assistance Publique-Hôpitaux de Paris, Hôpital Pitié-Salpétrière, Department of Clinical Pharmacology, Paris, France.
authors.forename: Christine
authors.initials: C
authors.lastname: Payan
authors.affiliation: Université de Lyon, Lyon, France; CNRS UMR 5558, Laboratoire de Biométrie et Biologie Evolutive, Equipe Biostatistique Santé, Pierre-Bénite, France; Hospices Civils de Lyon, Service de Biostatistique, Lyon, France.
authors.forename: Jean
authors.initials: J
authors.lastname: Iwaz
authors.affiliation: Centre Hospitalo-Universitaire de Montpellier, Montpellier, France.
authors.forename: Dalil
authors.initials: D
authors.lastname: Hamroun
authors.affiliation: Hospices Civils de Lyon, L'Escale, Pediatric Physical Medicine and Rehabilitation Department, Bron, France.
authors.forename: Carole
authors.initials: C
authors.lastname: Bérard
authors.affiliation: Hospices Civils de Lyon, L'Escale, Pediatric Physical Medicine and Rehabilitation Department, Bron, France.
authors.forename: Isabelle
authors.initials: I
authors.lastname: Poirot
authors.affiliation: Neuromuscular and Neurogenetic Disorders of Childhood Section, National Institute of Neurological Disorders and Stroke, National Institutes of Health, Bethesda, MD. Electronic address: carsten.bonnemann@nih.gov.
authors.forename: Carsten G
authors.initials: CG
authors.lastname: Bönnemann
mesh_terms: D000203:Activities of Daily Living; D000293:Adolescent; D002648:Child; D002675:Child, Preschool; D054521:Cultural Competency; D004739:England; D005260:Female; D006801:Humans; D008297:Male; D009048:Motor Skills / Q000145:classification*; D009136:Muscular Dystrophies / Q000151:congenital / Q000503:physiopathology*; D015588:Observer Variation; D015203:Reproducibility of Results; D012720:Severity of Illness Index; D011795:Surveys and Questionnaires; D014177:Translations; D055815:Young Adult
keywords: Activities of daily living; Disability evaluation; Neuromuscular diseases; Rehabilitation