Résumé :
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Health related quality of life (HRQoL) measures estimate interventions in health efficiency.This paper reports the first indispensable phase for the construction and validation of a HRQoL measure in patients with slowly neuromuscular disease (NMD) evolution.First phase of this work is composed of two parts. The first one consists in determining and developing of a pool of items (qualitative searches on the subject and direct collection from NMD focus group). 41 patients were recruited in four Hospital Centres (Angers-Nantes, Cril, Lille, Reims) and distributed in 3 groups (walking, in armchair, ventilated and in armchair). They were crossed with 3 types of NMD (generalized disease, proximal disease, myotonic syndromes). These exchanges were recorded, transcribed ( Verbatim) and analyzed (method Delphi) by an experts group. Items were reduced and classified with regard to the CIF and to the literature.The second stage (face validity) concerns acceptability, comprehension and feasibility of the pool of items. 69 patients were included. Validation of this instrument was estimated by appropriate statistical methods (IRT, factorial analysis).The second phase of HRQoL measure tool and the finalization of the psychometric validation of the questionnaire is in progress.
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