The quality of life in genetic neuromuscular disease questionnaire: Rasch validation of the French version

ABSTRACT Introduction Slowly progressive, genetic neuromuscular diseases (gNMDs) often lead to important motor deficiencies and functional limitations. The Quality of Life in Genetic Neuromuscular Disease Questionnaire (QoL‐gNMD) is a new health‐related quality‐of‐life questionnaire developed for th...

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Bibliographic Details
Published in:Muscle & nerve 2017-12, Vol.56 (6), p.1085-1091
Main Authors: Dany, Antoine, Rapin, Amandine, Lavrard, Brice, Saoût, Virginie, Réveillère, Christian, Bassez, Guillaume, Tiffreau, Vincent, Péréon, Yann, Sacconi, Sabrina, Eymard, Bruno, Dramé, Moustapha, Jolly, Damien, Novella, Jean‐Luc, Hardouin, Jean‐Benoit, Boyer, François C.
Format: Article
Language:English
Subjects:
Activities of Daily Living - psychology
Adolescent
Adult
Aged
Aged, 80 and over
Change detection
Correlation coefficient
Correlation coefficients
Disease control
Female
France
Humans
item response theory
Male
Measurement methods
Middle Aged
Neuromuscular diseases
Neuromuscular Diseases - diagnosis
Neuromuscular Diseases - epidemiology
Neuromuscular Diseases - psychology
Neuromuscular system
Patients
patient‐centered outcomes
Quality of life
Quality of Life - psychology
Quantitative psychology
Questionnaires
Rasch model
Surveys and Questionnaires - standards
Young Adult
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Summary:ABSTRACT Introduction Slowly progressive, genetic neuromuscular diseases (gNMDs) often lead to important motor deficiencies and functional limitations. The Quality of Life in Genetic Neuromuscular Disease Questionnaire (QoL‐gNMD) is a new health‐related quality‐of‐life questionnaire developed for these patients. The purpose of the present study was to validate the French version of the QoL‐gNMD and to calibrate its measurement system. Methods Both the QoL‐gNMD and a validated generic questionnaire (WHOQOL‐BREF) were administered to patients. Validation was performed using item response theory. The partial credit model (Rasch) was used to calibrate each domain. Results Three hundred fifteen adult patients were included. All 3 domains showed adequate psychometric properties (internal consistency: person separation index >0.77; repeatability: test–retest intraclass correlation coefficient >0.75, scalability coefficient >0.38) and fitted the partial credit model. The QoL‐gNMD also demonstrated adequate concurrent validity with the WHOQOL‐BREF. Discussion The QoL‐gNMD showed adequate psychometric properties and can be used in clinical settings. Although not anchor‐based, the minimum detectable change tables help in interpreting score change. Muscle Nerve 56: 1085–1091, 2017
ISSN:0148-639X
1097-4598
DOI:10.1002/mus.25598