The quality of life in genetic neuromuscular disease questionnaire: Rasch validation of the French version
Corresponding Author
Antoine Dany PT, PhD
Centre Hospitalier Universitaire de Reims, Hôpital Sébastopol, Service de Médecine Physique et Réadaptation, Centre de Référence des Maladies Neuromusculaires, EA 3797, 48, rue de Sébastopol, 51092 Reims Cedex, France
Correspondence to: A. Dany; e-mail: [email protected]Search for more papers by this authorAmandine Rapin MD, MSc
Centre Hospitalier Universitaire de Reims, Hôpital Sébastopol, Service de Médecine Physique et Réadaptation, Centre de Référence des Maladies Neuromusculaires, EA 3797, 48, rue de Sébastopol, 51092 Reims Cedex, France
Search for more papers by this authorBrice Lavrard MD
Centre Hospitalier Universitaire de Reims, Hôpital Sébastopol, Service de Médecine Physique et Réadaptation, Centre de Référence des Maladies Neuromusculaires, EA 3797, 48, rue de Sébastopol, 51092 Reims Cedex, France
Search for more papers by this authorVincent Tiffreau MD, PhD
Hôpital Pierre Swynghedauw, Lille, France
Search for more papers by this authorSabrina Sacconi MD, PhD
Centre Hospitalier Universitaire de Nice, Nice, France
Search for more papers by this authorMoustapha Dramé MD, PhD
Centre Hospitalier Universitaire de Reims, Hôpital Sébastopol, Service de Médecine Physique et Réadaptation, Centre de Référence des Maladies Neuromusculaires, EA 3797, 48, rue de Sébastopol, 51092 Reims Cedex, France
Search for more papers by this authorDamien Jolly MD, PhD
Centre Hospitalier Universitaire de Reims, Hôpital Sébastopol, Service de Médecine Physique et Réadaptation, Centre de Référence des Maladies Neuromusculaires, EA 3797, 48, rue de Sébastopol, 51092 Reims Cedex, France
Search for more papers by this authorJean-Luc Novella MD, PhD
Centre Hospitalier Universitaire de Reims, Hôpital Sébastopol, Service de Médecine Physique et Réadaptation, Centre de Référence des Maladies Neuromusculaires, EA 3797, 48, rue de Sébastopol, 51092 Reims Cedex, France
Search for more papers by this authorFrançois C. Boyer MD, PhD
Centre Hospitalier Universitaire de Reims, Hôpital Sébastopol, Service de Médecine Physique et Réadaptation, Centre de Référence des Maladies Neuromusculaires, EA 3797, 48, rue de Sébastopol, 51092 Reims Cedex, France
Search for more papers by this authorCorresponding Author
Antoine Dany PT, PhD
Centre Hospitalier Universitaire de Reims, Hôpital Sébastopol, Service de Médecine Physique et Réadaptation, Centre de Référence des Maladies Neuromusculaires, EA 3797, 48, rue de Sébastopol, 51092 Reims Cedex, France
Correspondence to: A. Dany; e-mail: [email protected]Search for more papers by this authorAmandine Rapin MD, MSc
Centre Hospitalier Universitaire de Reims, Hôpital Sébastopol, Service de Médecine Physique et Réadaptation, Centre de Référence des Maladies Neuromusculaires, EA 3797, 48, rue de Sébastopol, 51092 Reims Cedex, France
Search for more papers by this authorBrice Lavrard MD
Centre Hospitalier Universitaire de Reims, Hôpital Sébastopol, Service de Médecine Physique et Réadaptation, Centre de Référence des Maladies Neuromusculaires, EA 3797, 48, rue de Sébastopol, 51092 Reims Cedex, France
Search for more papers by this authorVincent Tiffreau MD, PhD
Hôpital Pierre Swynghedauw, Lille, France
Search for more papers by this authorSabrina Sacconi MD, PhD
Centre Hospitalier Universitaire de Nice, Nice, France
Search for more papers by this authorMoustapha Dramé MD, PhD
Centre Hospitalier Universitaire de Reims, Hôpital Sébastopol, Service de Médecine Physique et Réadaptation, Centre de Référence des Maladies Neuromusculaires, EA 3797, 48, rue de Sébastopol, 51092 Reims Cedex, France
Search for more papers by this authorDamien Jolly MD, PhD
Centre Hospitalier Universitaire de Reims, Hôpital Sébastopol, Service de Médecine Physique et Réadaptation, Centre de Référence des Maladies Neuromusculaires, EA 3797, 48, rue de Sébastopol, 51092 Reims Cedex, France
Search for more papers by this authorJean-Luc Novella MD, PhD
Centre Hospitalier Universitaire de Reims, Hôpital Sébastopol, Service de Médecine Physique et Réadaptation, Centre de Référence des Maladies Neuromusculaires, EA 3797, 48, rue de Sébastopol, 51092 Reims Cedex, France
Search for more papers by this authorFrançois C. Boyer MD, PhD
Centre Hospitalier Universitaire de Reims, Hôpital Sébastopol, Service de Médecine Physique et Réadaptation, Centre de Référence des Maladies Neuromusculaires, EA 3797, 48, rue de Sébastopol, 51092 Reims Cedex, France
Search for more papers by this authorThis project was supported by the French Muscular Dystrophy Association (Association française contre les myopathies/AFM-téléthon) and the Champagne-Ardenne Region (Programme ESSAIMAGE; principal investigator: François Constant Boyer).
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
Supporting Information
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