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

Isabella Moroni; Federica Rachele Danti; Davide Pareyson; Emanuela Pagliano; Giuseppe Piscosquito; Maria Foscan; Alessia Marchi; Anna Ardissone; Silvia Genitrini; Tong Tong Wu; Michael E Shy; Sindhu Ramchandren

doi:10.1111/jns.12494

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

Journal article

Open access

Peer reviewed

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

Isabella Moroni, Federica Rachele Danti, Davide Pareyson, Emanuela Pagliano, Giuseppe Piscosquito, Maria Foscan, Alessia Marchi, Anna Ardissone, Silvia Genitrini, Tong Tong Wu, …

Journal of the peripheral nervous system, Vol.27(2), pp.127-130

04/13/2022

DOI: 10.1111/jns.12494

PMCID: PMC9324941

PMID: 35416371

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https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9324941View

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Abstract

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.

Translation

Quality of Life

children

Charcot-Marie-Tooth disease

patient-reported outcome measures

Details

Title: Subtitle: Validation of the Italian version of the pediatric CMT quality of life outcome measure
Creators: Isabella Moroni - Fondazione IRCCS Istituto Neurologico Carlo Besta
Federica Rachele Danti - Fondazione IRCCS Istituto Neurologico Carlo Besta
Davide Pareyson - Fondazione IRCCS Istituto Neurologico Carlo Besta
Emanuela Pagliano - Fondazione IRCCS Istituto Neurologico Carlo Besta
Giuseppe Piscosquito - Department of Neurology, Azienda Ospedaliera Universitaria "San Giovanni di Dio e Ruggi d'Aragona", Salerno, Italy
Maria Foscan - Fondazione IRCCS Istituto Neurologico Carlo Besta
Alessia Marchi - Fondazione IRCCS Istituto Neurologico Carlo Besta
Anna Ardissone - Fondazione IRCCS Istituto Neurologico Carlo Besta
Silvia Genitrini - Fondazione IRCCS Istituto Neurologico Carlo Besta
Tong Tong Wu - University of Rochester
Michael E Shy - Department of Neurology, The University of Iowa Hospitals and Clinics, Iowa City, Iowa, USA
Sindhu Ramchandren - Janssen Pharmaceutical Companies of Johnson and Johnson, Titusville, New Jersey, USA
Resource Type: Journal article
Publication Details: Journal of the peripheral nervous system, Vol.27(2), pp.127-130
DOI: 10.1111/jns.12494
PMID: 35416371
PMCID: PMC9324941
NLM abbreviation: J Peripher Nerv Syst
eISSN: 1529-8027
Language: English
Date published: 04/13/2022
Academic Unit: Neurology; Molecular Physiology and Biophysics; Stead Family Department of Pediatrics; Iowa Neuroscience Institute
Record Identifier: 9984256774202771

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