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Validation of the Italian version of the pediatric CMT quality of life outcome measure
Author(s) -
Moroni Isabella,
Danti Federica Rachele,
Pareyson Davide,
Pagliano Emanuela,
Piscosquito Giuseppe,
Foscan Maria,
Marchi Alessia,
Ardissone Anna,
Genitrini Silvia,
Wu Tong Tong,
Shy Michael E,
Ramchandren Sindhu
Publication year - 2022
Publication title -
journal of the peripheral nervous system
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1
H-Index - 67
eISSN - 1529-8027
pISSN - 1085-9489
DOI - 10.1111/jns.12494
Subject(s) - quality of life (healthcare) , reliability (semiconductor) , medicine , quality of life research , clinical trial , disease , clinical psychology , pediatrics , pathology , public health , nursing , quantum mechanics , power (physics) , physics
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.