Title :

Construction of a Quality of Life Questionnaire for slowly progressive neuromuscular disease

Author(s) :

Dany, Antoine [Auteur]
Barbe, Coralie [Auteur]
Rapin, Amandine [Auteur]
Réveillère, Christian [Auteur]
Hardouin, Jean-Benoit [Auteur]
Morrone, Isabella [Auteur]
Wolak-Thierry, Aurore [Auteur]
Drame, Moustapha [Auteur]
Calmus, Arnaud [Auteur]
Sacconi, Sabrina [Auteur]
Bassez, Guillaume [Auteur]
Tiffreau, Vincent [Auteur]
Unité de Recherche Pluridisciplinaire Sport, Santé, Société (URePSSS) - ULR 7369 - ULR 4488 [URePSSS]
Unité de Recherche Pluridisciplinaire Sport, Santé, Société (URePSSS) - ULR 7369
Richard, Isabelle [Auteur]
Gallais, Benjamin [Auteur]
Prigent, Helene [Auteur]
Taiar, Redha [Auteur]
Jolly, Damien [Auteur]
Novella, Jean-Luc [Auteur]
Boyer, François-Constant [Auteur]

Journal title :

Quality of life research

Abbreviated title :

Qual. Life Res.

Volume number :

24

Pages :

2615-2623

Publication date :

2015-11-01

ISSN :

0962-9343

English keyword(s) :

Neuromuscular disease
Quality of life
Patient outcome assessment
Outcome research
Item response theory

HAL domain(s) :

Sciences du Vivant [q-bio]

English abstract : [en]

OBJECTIVE: To build a questionnaire to assess health-related quality of life (HRQL) in patients suffering from slowly progressive neuromuscular disease (NMD) using item response theory (IRT). METHODS: A pool of 64 items ...
Show more >OBJECTIVE: To build a questionnaire to assess health-related quality of life (HRQL) in patients suffering from slowly progressive neuromuscular disease (NMD) using item response theory (IRT). METHODS: A pool of 64 items and a validated questionnaire (WHOQOL-BREF) were administered to 159 patients recruited in eight NMD referral centers. Exploratory statistical analysis included methods derived from both IRT and classical test theory. RESULTS: We constructed a questionnaire named QoL-NMD which is composed of two general items and 24 items classified in three domains: (1) "Impact of Physical Symptoms," (2) "Self-perception" and (3) "Activities and Social Participation." Each domain has good psychometric properties (Cronbach's alpha > 0.77, test-retest ICC > 0.81, Loevinger's H > 0.41) and meets IRT assumptions. Comparison with the WHOQOL-BREF enabled assessing similarities and discrepancies with a generic questionnaire. CONCLUSIONS: This study enabled the development of a new HRQL questionnaire specifically designed for slowly progressive NMD patients. The QoL-NMD is short enough to be used in clinical practice (26 items). The next steps will be to validate QoL-NMD by re-assessing psychometrics in an independent sample of patients and calibrate the IRT scoring system.Show less >

Language :

Anglais

Audience :

Internationale

Popular science :

Non

Administrative institution(s) :

Univ. Littoral Côte d’Opale
Univ. Artois
Université de Lille

Collections :

• Unité de Recherche Pluridisciplinaire Sport, Santé, Société (URePSSS) - ULR 7369

Research team(s) :

Activité Physique, Muscle, Santé (APMS)

Submission date :

2019-09-24T10:01:56Z