caa a22 4500 606180648 CHVBK 20210128100807.0 cr unu---uuuuu 210128e20151101xx s 000 0 eng 10.1007/s11136-015-1013-8 doi (NATIONALLICENCE)springer-10.1007/s11136-015-1013-8 Construction of a Quality of Life Questionnaire for slowly progressive neuromuscular disease [Elektronische Daten] [Antoine Dany, Coralie Barbe, Amandine Rapin, Christian Réveillère, Jean-Benoit Hardouin, Isabella Morrone, Aurore Wolak-Thierry, Moustapha Dramé, Arnaud Calmus, Sabrina Sacconi, Guillaume Bassez, Vincent Tiffreau, Isabelle Richard, Benjamin Gallais, Hélène Prigent, Redha Taiar, Damien Jolly, Jean-Luc Novella, François Boyer] Purpose: 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. Conclusion: 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. Springer International Publishing Switzerland, 2015 Item response theory nationallicence Neuromuscular disease nationallicence Outcome research nationallicence Patient outcome assessment nationallicence Quality of life nationallicence Dany Antoine University of Reims Champagne-Ardenne, Reims, France aut Barbe Coralie University of Reims Champagne-Ardenne, Reims, France aut Rapin Amandine University of Reims Champagne-Ardenne, Reims, France aut Réveillère Christian Henri Mondor Hospital, Créteil, France aut Hardouin Jean-Benoit University of Nantes, Nantes, France aut Morrone Isabella University of Reims Champagne-Ardenne, Reims, France aut Wolak-Thierry Aurore University of Reims Champagne-Ardenne, Reims, France aut Dramé Moustapha University of Reims Champagne-Ardenne, Reims, France aut Calmus Arnaud University of Reims Champagne-Ardenne, Reims, France aut Sacconi Sabrina Nice University Hospital, Nice, France aut Bassez Guillaume Henri Mondor Hospital, Créteil, France aut Tiffreau Vincent Swynghedauw Hospital, Lille, France aut Richard Isabelle Angers University Hospital, Angers, France aut Gallais Benjamin Myology Institute, Paris, France aut Prigent Hélène Raymond-Poincaré Hospital, Garches, France aut Taiar Redha University of Reims Champagne-Ardenne, Reims, France aut Jolly Damien University of Reims Champagne-Ardenne, Reims, France aut Novella Jean-Luc University of Reims Champagne-Ardenne, Reims, France aut Boyer François University of Reims Champagne-Ardenne, Reims, France aut Quality of Life Research Springer International Publishing 24/11(2015-11-01), 2615-2623 0962-9343 24:11<2615 2015 24 11136 https://doi.org/10.1007/s11136-015-1013-8 text/html Onlinezugriff via DOI BK010053 XK010053 XK010000 Metadata rights reserved Springer special CC-BY-NC licence nationallicence 1 research-article jats NATIONALLICENCE NATIONALLICENCE NL-springer NATIONALLICENCE 856 40 https://doi.org/10.1007/s11136-015-1013-8 text/html Onlinezugriff via DOI NATIONALLICENCE 700 1- Dany Antoine University of Reims Champagne-Ardenne, Reims, France aut NATIONALLICENCE 700 1- Barbe Coralie University of Reims Champagne-Ardenne, Reims, France aut NATIONALLICENCE 700 1- Rapin Amandine University of Reims Champagne-Ardenne, Reims, France aut NATIONALLICENCE 700 1- Réveillère Christian Henri Mondor Hospital, Créteil, France aut NATIONALLICENCE 700 1- Hardouin Jean-Benoit University of Nantes, Nantes, France aut NATIONALLICENCE 700 1- Morrone Isabella University of Reims Champagne-Ardenne, Reims, France aut NATIONALLICENCE 700 1- Wolak-Thierry Aurore University of Reims Champagne-Ardenne, Reims, France aut NATIONALLICENCE 700 1- Dramé Moustapha University of Reims Champagne-Ardenne, Reims, France aut NATIONALLICENCE 700 1- Calmus Arnaud University of Reims Champagne-Ardenne, Reims, France aut NATIONALLICENCE 700 1- Sacconi Sabrina Nice University Hospital, Nice, France aut NATIONALLICENCE 700 1- Bassez Guillaume Henri Mondor Hospital, Créteil, France aut NATIONALLICENCE 700 1- Tiffreau Vincent Swynghedauw Hospital, Lille, France aut NATIONALLICENCE 700 1- Richard Isabelle Angers University Hospital, Angers, France aut NATIONALLICENCE 700 1- Gallais Benjamin Myology Institute, Paris, France aut NATIONALLICENCE 700 1- Prigent Hélène Raymond-Poincaré Hospital, Garches, France aut NATIONALLICENCE 700 1- Taiar Redha University of Reims Champagne-Ardenne, Reims, France aut NATIONALLICENCE 700 1- Jolly Damien University of Reims Champagne-Ardenne, Reims, France aut NATIONALLICENCE 700 1- Novella Jean-Luc University of Reims Champagne-Ardenne, Reims, France aut NATIONALLICENCE 700 1- Boyer François University of Reims Champagne-Ardenne, Reims, France aut NATIONALLICENCE 773 0- Quality of Life Research Springer International Publishing 24/11(2015-11-01), 2615-2623 0962-9343 24:11<2615 2015 24 11136