Validation of the Italian version of the Charcot-Marie-Tooth Health Index.

Journal of the Peripheral Nervous System : JPNS
Chiara PisciottaACT-CMT Study Group

Abstract

The Charcot-Marie-Tooth Health Index (CMT-HI) is a disease-specific patient-reported outcome measure measuring overall disease burden in Charcot-Marie-Tooth (CMT) patients, designed for natural history studies and clinical trials in English-speaking affected individuals. We developed and validated its Italian Charcot-Marie-Tooth Health Index (I-CMT-HI) version. The questionnaire was translated and culturally adapted from source into Italian by two neurologists experienced in CMT and neuromuscular disorders (NMDs). The two translations were reviewed by a panel of seven experts in CMT and NMD. The provisional version was back-translated into English by a professional translator. The definitive Italian version was developed during a consensus teleconference by the panel and a patient representative from ACMT-Rete. A series of clinically and genetically characterized CMT patients completed the final questionnaire; 11 participated in a test-retest reliability assessment of the instrument. The I-CMT-HI was administered to 30 CMT patients (13 CMT1A, eight CMTX1, two CMT1B, two CMT1E, two CMT2I, one CMT2A, one CMT2N, one distal Hereditary Motor Neuropathy), with test-rest in 11:14 females and 16 males, aged (mean ± SD) 48.0 ± 16.4 year...Continue Reading

References

Apr 5, 2005·Value in Health : the Journal of the International Society for Pharmacoeconomics and Outcomes Research·Diane WildUNKNOWN ISPOR Task Force for Translation and Cultural Adaptation
Oct 19, 2011·Journal of the Peripheral Nervous System : JPNS·Sinéad M MurphyDavide Pareyson
Aug 1, 2015·European Journal of Neurology : the Official Journal of the European Federation of Neurological Societies·G PiscosquitoUNKNOWN CMT-TRAUK Group
Jul 6, 2017·Current Opinion in Neurology·Davide PareysonChiara Pisciotta
Jul 18, 2018·Annals of Neurology·Nicholas E JohnsonDavid N Herrmann
Jan 4, 2020·Brain Research·A M RossorM M Reilly

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Citations

May 26, 2021·Expert Review of Neurotherapeutics·Chiara PisciottaDavide Pareyson

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