Untreated patients with multiple sclerosis: A study of French expert centers
Xavier Moisset and Audrey-Anne Fouchard contributed equally to the work.
Abstract
Background and purpose
Disease-modifying therapies (DMTs) have an impact on relapses and disease progression. Nonetheless, many patients with multiple sclerosis (MS) remain untreated. The objectives of the present study were to determine the proportion of untreated patients with MS followed in expert centers in France and to determine the predictive factors of nontreatment.
Methods
We conducted a retrospective cohort study. Data were extracted from the 38 centers participating in the European Database for Multiple Sclerosis (EDMUS) on December 15, 2018, and patients with MS seen at least once during the study period (from June 15, 2016 to June 14, 2017) were included.
Results
Of the 21,189 patients with MS (age 47.1 ± 13.1 years; Expanded Disability Status Scale (EDSS) score 3.4 ± 2.4), 6,631 (31.3%; 95% confidence interval [CI] 30.7–31.9) were not receiving any DMT. Although patients with a relapsing-remitting course (n = 11,693) were the most likely to receive DMT, 14.8% (95% CI 14.2–15.4) were still untreated (6.8% never treated). After multivariate analysis among patients with relapsing-remitting MS, the main factors explaining never having been treated were: not having ≥9 lesions on brain magnetic resonance imaging (odds ratio [OR] 0.52 [95% CI 0.44–0.61]) and lower EDSS score (OR 0.78 [95% CI 0.74–0.82]). Most patients with progressive MS (50.4% for secondary and 64.2% for primary progressive MS) did not receive any DMT during the study period, while 11.6% of patients with secondary and 34.0% of patients with primary progressive MS had never received any DMT.
Conclusion
A significant proportion of patients with MS did not receive any DMT, even though such treatments are reimbursed by the healthcare system for French patients. This result highlights the unmet need for current DMTs for a large subgroup of patients with MS.
CONFLICT OF INTEREST
Xavier Moisset has received personal fees from Lilly, TBWA, Teva, Novartis, Roche, Biogen, Sanofi-Genzyme and Merck Serono, and non-financial support from SOS Oxygène, Boehringer and Bristol Myers Squibb, not related to the submitted work. Audrey-Anne Fouchard has received personal fees or non-financial support from Genzyme, Merck Serono and Pfizer, not related to the submitted work. Bruno Pereira has received fees from Biogen. Frédéric Taithe has received personal fees or non-financial support from Biogen, Sanofi Aventis, Novartis, Merck Serono, Roche, Genzyme, LFB and Pfizer, not related to the submitted work. Guillaume Mathey has had travel/accommodations/meeting expenses funded by Biogen, Novartis, Sanofi-Genzyme, Merck, Teva and Roche. Gilles Edan has received consultancy and lecture fees from Bayer Schering, Biogen, LFB, Merck, Novartis, Roche and Sanofi, and research grants from Bayer, Biogen, Genzyme, Merck, Novartis, Roche, Teva and the ARSEP Foundation. He has been principal investigator in phase 2 and 3 clinical studies conducted by Bayer, Biogen, Merck, Novartis, Sanofi-Aventis Teva and four academic programs (Programmes Hospitaliers de Recherche Clinique, PHRC) on MS sponsored by Rennes University Hospital. Jonathan Ciron has received personal compensation for consulting, serving on a scientific advisory board, speaking or other activities from Biogen, Novartis, Merck, Genzyme, Roche and Teva, not related to this study. Bruno Brochet has received consulting and lecture fees from Actelion, Bayer, Celgene, Biogen, MedDay, Merck KGaA (Darmstadt, Germany), Novartis, Roche, Sanofi-Genzyme and Teva. Jérôme De Sèze has received consulting and lecture fees, travel grants and unconditional research support from MedDay, Biogen, Genzyme, Novartis, Merck Serono, Roche, Sanofi Aventis and Teva Pharma. Caroline Papeix has received consulting and lecturing fees and travel grants from Biogen, Novartis, Merck, Roche, Sanofi, Teva Pharma and MedDay. Patrick Vermersch has received honoraria and consulting fees from Biogen, Sanofi-Genzyme, Novartis, Teva, Merck, Roche, Servier, Celgene, MedDay and Almirall, and research support from Biogen, Novartis, Sanofi-Genzyme, Roche and Merck. Pierre Labauge has received consulting and lecturing fees, travel grants and unconditional research support from Biogen, Genzyme, Novartis, Merck Serono, Roche and Teva Pharma. Gilles Defer has received personal compensation as a member of the scientific advisory board from Biogen Idec, Novartis, Genzyme and Teva Pharmaceutical Industries Ltd, and has received funding for travel and/or speaker honoraria from Merck Serono, Biogen Idec, Novartis, Genzyme and Teva Pharmaceutical Industries. His institution has received grants supporting research in his department from Merck Serono, Biogen Idec, Novartis and Genzyme. Christine Lebrun-Frenay has received consulting or lectures fees from MedDay, Sanofi, Genzyme, Roche and Novartis. Thibault Moreau has received fees as a scientific adviser from Biogen, MedDay, Novartis, Genzyme and Sanofi. David Axel Laplaud has received consulting and lecture fees, travel grants and unconditional research support from Biogen, Genzyme, Novartis, Merck Serono, Roche, Sanofi Aventis and Teva Pharma. Eric Berger has received research support from Biogen, and honoraria and consulting fees from Novartis, Sanofi Aventis, Biogen, Genzyme, Roche and Teva Pharma. Olivier Gout has received personal fees and non-financial support from MedDay Pharmaceuticals, Biogen, Novartis, Genzyme, Merck Serono, Novartis, Roche, Elivie and Teva, not related to the submitted work. Eric Thouvenot has received consulting and lecturing fees, travel grants or unconditional research support from the following pharmaceutical companies: Actelion, Biogen, Celgene, Genzyme, MedDay, Merck Serono, Novartis, Roche and Teva pharma, not related to the submitted work. Olivier Heinzlef has received consulting and lecture fees from Bayer Schering, Merck, Teva, Genzyme, Novartis, Almirall and Biogen Idec, travel grants from Novartis, Teva, Genzyme, Merck Serono and Biogen Idec, and research support from Roche, Merck and Novartis. Abdullatif Bertrand Bourre has received funding for travel and honoraria from Biogen Idec, MedDay Pharmaceuticals, Merck Serono, Novartis, Sanofi, Roche and Teva. Philippe Cabre has received funding for travel by Novartis. Alexis Montcuquet has had travel/accommodations/meeting expenses funded by Biogen, Novartis, Sanofi-Genzyme, Merck, Teva and Roche. Jean-Philippe Camdessanché has received fees for lectures, consulting, writing of articles, and training courses from Akcea, Alnylam, Biogen, CSL-Behring, Genzyme, Grifols, LFB, Merck, Novartis, Pfizer, Pharmalliance, Teva, Editions Scientifiques L&C, Edimark, Expression Santé, Natus, Scien and SNF-Floerger, not related to the submitted work.. Aude Maurousset has received funding for travel from Merck Serono, Teva, Novartis, Sanofi-Genzyme, Biogen and Roche, and honoria from Biogen, Novartis and Roche, not related to the submitted work. Sandra Vukusic has received grants, personal fees and non-financial support from Biogen, Celgene, GeNeuro, Genzyme, MedDay, Merck Serono, Novartis, Roche, Sanofi and Teva, not related to the submitted work. Pierre Clavelou reports fees from Teva, Sanofi, Merck, Roche, Novartis and Actelion, and non-financial support from MedDay and Biogen, not related to the submitted work. Jean Pelletier, Bruno Stankoff, Al-Khedr, Olivier Casez, Alain Créange, Serge Bakchine, Karolina Hankiewicz, Corinne Pottier, Nicolas Maubeuge, Dalia Dimitri Boulos and Chantal Nifle have nothing to disclose.
Open Research
DATA AVAILABILITY STATEMENT
The data that support the findings of this study are available from the corresponding author upon reasonable request.
