Validation of the Italian version of the pediatric CMT quality of life outcome measure.

Autor: Moroni I; Department of Pediatric Neurosciences, Fondazione IRCCS Istituto Neurologico Carlo Besta, Milan, Italy., Danti FR; Department of Pediatric Neurosciences, Fondazione IRCCS Istituto Neurologico Carlo Besta, Milan, Italy., Pareyson D; Rare Neurodegenerative and Neurometabolic Diseases Unit, Department of Clinical Neurosciences, Fondazione IRCCS Istituto Neurologico Carlo Besta, Milan, Italy., Pagliano E; Department of Pediatric Neurosciences, Fondazione IRCCS Istituto Neurologico Carlo Besta, Milan, Italy., Piscosquito G; Department of Neurology, Azienda Ospedaliera Universitaria 'San Giovanni di Dio e Ruggi d'Aragona', Salerno, Italy., Foscan M; Department of Pediatric Neurosciences, Fondazione IRCCS Istituto Neurologico Carlo Besta, Milan, Italy., Marchi A; Department of Pediatric Neurosciences, Fondazione IRCCS Istituto Neurologico Carlo Besta, Milan, Italy., Ardissone A; Department of Pediatric Neurosciences, Fondazione IRCCS Istituto Neurologico Carlo Besta, Milan, Italy., Genitrini S; Department of Pediatric Neurosciences, Fondazione IRCCS Istituto Neurologico Carlo Besta, Milan, Italy., Wu TT; Department of Biostatistics and Computational Biology, University of Rochester, Rochester, New York, USA., Shy ME; Department of Neurology, The University of Iowa Hospitals and Clinics, Iowa City, Iowa, USA., Ramchandren S; Janssen Pharmaceutical Companies of Johnson and Johnson, Titusville, New Jersey, USA.
Jazyk: angličtina
Zdroj: Journal of the peripheral nervous system : JPNS [J Peripher Nerv Syst] 2022 Jun; Vol. 27 (2), pp. 127-130. Date of Electronic Publication: 2022 May 03.
DOI: 10.1111/jns.12494
Abstrakt: The pediatric Charcot-Marie-Tooth (CMT) specific quality of life (QOL) outcome measure (pCMT-QOL) is a recently developed and validated patient-reported measure of health QOL for children with CMT. The aim of this study was to provide and validate an Italian version of the pCMT-QOL. The original English version was translated and adapted into Italian using standard procedures. pCMT-QOL was administered to patients genetically diagnosed with CMT, aged 8 to 18 years. A retest was given 2 weeks later to assess reliability in all patients. A total of 22 patients (median age 14 years, DS 2.5; M:F 1:1) affected with CMT (19 CMT1A, 2 CMT2A, 1 CMT2K) were assessed as part of their clinical visit. The Italian-pCMT-QOL demonstrate a high test-retest reliability. None of the patients experienced difficulty in completing the questionnaire, no further corrections were needed after administration in patients. The Italian-pCMT-QOL is a reliable, culturally adapted and comparable version of the original English pCMT-QOL. This questionnaire is expected to be valuable in monitoring disease progression and useful for future clinical trials in Italian-speaking children with CMT.
(© 2022 The Authors. Journal of the Peripheral Nervous System published by Wiley Periodicals LLC on behalf of Peripheral Nerve Society.)
Databáze: MEDLINE
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