Literature DB >> 20667058

International development of the patient-reported outcome indices for multiple sclerosis (PRIMUS).

Stephen P McKenna1, Lynda C Doward, James Twiss, Peter Hagell, Nadia C Oprandi, John Fisk, François Grand'Maison, Virender Bhan, Txomin Arbizu, David Brassat, Thomas Kohlmann, David M Meads, Benjamin J Eckert.   

Abstract

BACKGROUND: The Patient-Reported Indices for Multiple Sclerosis (PRIMUS) comprises a suite of three scales for assessing symptoms, activity limitations, and quality of life in multiple sclerosis (MS). It was developed in the UK and has been shown to have excellent psychometric properties. This study describes the adaptation of eight language versions for Canadian English, Canadian French, French, German, Italian, Spanish, Swedish, and US English.
METHODS: The PRIMUS was translated using the dual-panel process. Cognitive debriefing interviews conducted with MS patients assessed face and content validity. Psychometric and scaling properties were assessed via a two-administration postal survey conducted in each country involving the PRIMUS, the Nottingham Health Profile (NHP), the Unidimensional Fatigue Impact Scale (U-FIS), and demographic questions.
RESULTS: Cognitive debriefing interviews demonstrated the acceptability of the new language versions. Analysis of survey data showed that the new language versions of the three PRIMUS scales were unidimensional (as indicated by fit to the Rasch model) and that they had good internal consistency and reproducibility. PRIMUS scale scores correlated as expected with those on the NHP and the U-FIS. The scales in all countries were able to discriminate between groups of patients on the basis of their self-reported MS severity, general health, and employment status.
CONCLUSIONS: The PRIMUS was successfully adapted into eight new languages. Most of the tests showed the PRIMUS to have good unidimensionality and to have good internal consistency, reproducibility, and construct validity. The measure is now available for use in clinical studies and trials involving these countries and the UK. Further work is required to assess the measure's responsiveness.
© 2010, International Society for Pharmacoeconomics and Outcomes Research (ISPOR).

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Year:  2010        PMID: 20667058     DOI: 10.1111/j.1524-4733.2010.00767.x

Source DB:  PubMed          Journal:  Value Health        ISSN: 1098-3015            Impact factor:   5.725


  11 in total

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Authors:  Stina Bladh; Maria H Nilsson; Gun-Marie Hariz; Albert Westergren; Jeremy Hobart; Peter Hagell
Journal:  J Neurol       Date:  2011-09-29       Impact factor: 4.849

2.  Validation of a new quality of life scale related to multiple sclerosis and relapses.

Authors:  Antoine Baroin; Gilles Chopard; Gaye Siliman; Clément Michoudet; Aurore Vivot; Chrystelle Vidal; Hassna Mokadym; Annick Lavier; Eric Berger; Lucien Rumbach; Nathalie Rude
Journal:  Qual Life Res       Date:  2012-12-18       Impact factor: 4.147

3.  Four years of early benefit assessment of new drugs in Germany: a qualitative study on methodological requirements for quality of life data.

Authors:  Christine Blome; Matthias Augustin; Hidayet Metin; David Lohrberg
Journal:  Eur J Health Econ       Date:  2016-02-02

4.  Interpreting scores on multiple sclerosis-specific patient reported outcome measures (the PRIMUS and U-FIS).

Authors:  James Twiss; Lynda C Doward; Stephen P McKenna; Benjamin Eckert
Journal:  Health Qual Life Outcomes       Date:  2010-10-11       Impact factor: 3.186

5.  Validation of the spanish version of the Multiple Sclerosis International Quality of Life (Musiqol) questionnaire.

Authors:  Oscar Fernández; Victoria Fernández; Karine Baumstarck-Barrau; Luis Muñoz; Maria del Mar Gonzalez Alvarez; José Carlos Arrabal; Antonio León; Ana Alonso; Jose Carlos López-Madrona; Rafael Bustamante; Gloria Luque; Miguel Guerrero; Elisabetta Verdun di Cantogno; Pascal Auquier
Journal:  BMC Neurol       Date:  2011-10-18       Impact factor: 2.474

6.  ExtaviJect® 30G device for subcutaneous self-injection of interferon beta-1b for multiple sclerosis: a prospective European study.

Authors:  Gabriel Boeru; Ivan Milanov; Francesca De Robertis; Wojciech Kozubski; Michael Lang; Sònia Rojas-Farreras; Mark Tomlinson
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7.  Disability and Fatigue Can Be Objectively Measured in Multiple Sclerosis.

Authors:  Caterina Motta; Eduardo Palermo; Valeria Studer; Marco Germanotta; Giorgio Germani; Diego Centonze; Paolo Cappa; Silvia Rossi; Stefano Rossi
Journal:  PLoS One       Date:  2016-02-10       Impact factor: 3.240

8.  Rationale, design, and methods of a non-interventional study to establish safety, effectiveness, quality of life, cognition, health-related and work capacity data on Alemtuzumab in multiple sclerosis patients in Germany (TREAT-MS).

Authors:  Tjalf Ziemssen; Ulrich Engelmann; Sigbert Jahn; Alexandra Leptich; Raimar Kern; Lina Hassoun; Katja Thomas
Journal:  BMC Neurol       Date:  2016-07-19       Impact factor: 2.474

9.  Analysis of the psychometric properties of the Multiple Sclerosis Impact Scale-29 (MSIS-29) in relapsing-remitting multiple sclerosis using classical and modern test theory.

Authors:  E D Bacci; K W Wyrwich; G A Phillips; T Vollmer; S Guo
Journal:  Mult Scler J Exp Transl Clin       Date:  2016-10-09

10.  Effectiveness of delayed-release dimethyl fumarate on patient-reported outcomes and clinical measures in patients with relapsing-remitting multiple sclerosis in a real-world clinical setting: PROTEC.

Authors:  T Berger; B Brochet; L Brambilla; P S Giacomini; X Montalbán; A Vasco Salgado; R Su; A Bretagne
Journal:  Mult Scler J Exp Transl Clin       Date:  2019-12-02
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