The quality of life in genetic neuromuscular ...
Document type :
Article dans une revue scientifique
DOI :
PMID :
Permalink :
Title :
The quality of life in genetic neuromuscular disease questionnaire: Rasch validation of the French version
Author(s) :
Dany, Antoine [Auteur]
Rapin, Amandine [Auteur]
Lavrard, Brice [Auteur]
Saout, Virginie [Auteur]
Réveillère, Christian [Auteur]
Bassez, Guillaume [Auteur]
Tiffreau, Vincent [Auteur]
Unité de Recherche Pluridisciplinaire Sport, Santé, Société (URePSSS) - ULR 7369
Unité de Recherche Pluridisciplinaire Sport, Santé, Société (URePSSS) - ULR 7369 - ULR 4488 [URePSSS]
Péréon, Yann [Auteur]
Sacconi, Sabrina [Auteur]
Eymard, Bruno [Auteur]
Drame, Moustapha [Auteur]
Jolly, Damien [Auteur]
Novella, Jean-Luc [Auteur]
Hardouin, Jean-Benoit [Auteur]
Boyer, François-Constant [Auteur]
Rapin, Amandine [Auteur]
Lavrard, Brice [Auteur]
Saout, Virginie [Auteur]
Réveillère, Christian [Auteur]
Bassez, Guillaume [Auteur]
Tiffreau, Vincent [Auteur]

Unité de Recherche Pluridisciplinaire Sport, Santé, Société (URePSSS) - ULR 7369
Unité de Recherche Pluridisciplinaire Sport, Santé, Société (URePSSS) - ULR 7369 - ULR 4488 [URePSSS]
Péréon, Yann [Auteur]
Sacconi, Sabrina [Auteur]
Eymard, Bruno [Auteur]
Drame, Moustapha [Auteur]
Jolly, Damien [Auteur]
Novella, Jean-Luc [Auteur]
Hardouin, Jean-Benoit [Auteur]
Boyer, François-Constant [Auteur]
Journal title :
Muscle & nerve
Abbreviated title :
Muscle Nerve
Volume number :
56
Pages :
1085-1091
Publication date :
2017-12-01
ISSN :
0148-639X
1097-4598
1097-4598
English keyword(s) :
quality of life
neuromuscular diseases
item response theory
patient-centered outcomes
Rasch model
neuromuscular diseases
item response theory
patient-centered outcomes
Rasch model
HAL domain(s) :
Sciences du Vivant [q-bio]
English abstract : [en]
BACKGROUND: 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) ...
Show more >BACKGROUND: 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. CONCLUSIONS: 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.Show less >
Show more >BACKGROUND: 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. CONCLUSIONS: 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.Show less >
Language :
Anglais
Audience :
Internationale
Popular science :
Non
Administrative institution(s) :
Univ. Littoral Côte d’Opale
Univ. Artois
Université de Lille
Univ. Artois
Université de Lille
Research team(s) :
Activité Physique, Muscle, Santé (APMS)
Submission date :
2019-09-24T10:01:46Z