Xavier Moisset1, Audrey-Anne Fouchard1, Bruno Pereira1, Frédéric Taithe1, Guillaume Mathey2,3, Gilles Edan4, Jonathan Ciron5, Bruno Brochet6,7,8, Jérôme De Sèze9, Caroline Papeix10, Patrick Vermersch11, Pierre Labauge12,13, Gilles Defer14, Christine Lebrun-Frenay15, Thibault Moreau16, David Laplaud17,18, Eric Berger19, Jean Pelletier20, Bruno Stankoff21, Olivier Gout22, Eric Thouvenot23,24, Olivier Heinzlef25, Abdullatif Al-Khedr26, Bertrand Bourre27,28, Olivier Casez29, Philippe Cabre30, Alexis Montcuquet31, Alain Créange32, Jean-Philippe Camdessanché33, Serge Bakchine34, Aude Maurousset35, Karolina Hankiewicz36, Corinne Pottier37, Nicolas Maubeuge38, Dalia Dimitri Boulos39, Chantal Nifle40, Sandra Vukusic41,42,43, Pierre Clavelou1. 1. Neuro-Dol, Université Clermont Auvergne, CHU de Clermont-Ferrand, Inserm, Clermont-Ferrand, France. 2. Department of Neurology, Nancy University Hospital, Nancy, France. 3. EA 4360 APEMAC, Université de Lorraine, Vandoeuvre-Lès-Nancy, France. 4. CIC1414 INSERM, CHU Pontchaillou, Rennes, France. 5. Department of Neurology, CHU de Toulouse, CRC-SEP, Toulouse, France. 6. University of Bordeaux, Bordeaux, France. 7. INSERM U1215, Neurocentre Magendie, Bordeaux, France. 8. CHU de Bordeaux, CIC Bordeaux CIC1401, Bordeaux, France. 9. Department of Neurology and Clinical Investigation Center, CHU de Strasbourg, INSERM 1434, Strasbourg, France. 10. Department of Neurology, APHP, Pitié-Salpêtrière Hospital, Paris, France. 11. University of Lille, INSERM UMR-S1172, CHU Lille, FHU Imminent, Lille, France. 12. MS Unit, CHU de Montpellier, Montpellier Cedex 5, France. 13. University of Montpellier (MUSE), Montpellier, France. 14. Department of Neurology, CHU de la Côte de Nacre, Caen, France. 15. CHU de Nice; UR2CA, Nice Cote d'Azur University, CRCSEP Nice, Pasteur2 Hospital, Nice, France. 16. Department of Neurology, CHU de Dijon, EA4184, Dijon, France. 17. Service de Neurologie & CIC015 INSERM, CHU de Nantes, Nantes, France. 18. INSERM CR1064, Nantes, France. 19. Service de Neurologie, CHU de Besançon, Besançon, France. 20. Service de Neurologie, Hôpital de la Timone, Pôle de Neurosciences Cliniques, Aix Marseille University, APHM, Marseille, France. 21. Service de Neurologie, Assistance publique des hôpitaux de Paris, Hôpital Saint-Antoine, Paris, France. 22. Department of Neurology, Fondation Rotschild, Paris, France. 23. Department of Neurology, Nîmes University Hospital, Nîmes, France. 24. Institut de Génomique Fonctionnelle, Université de Montpellier, CNRS, INSERM, Montpellier, France. 25. Department of Neurology, Poissy Hôpital de Poissy, Poissy, France. 26. Service de Neurologie, Centre Hospitalier Universitaire d'Amiens Picardie, Site Sud, Amiens, France. 27. CHU de Rouen, Rouen, France. 28. Rouen University Hospital, Rouen, France. 29. Service de Neurologie, Centre Hospitalier Universitaire Grenoble-Alpes, Site Nord, Grenoble/La Tronche, France. 30. Service de Neurologie, Hôpital Pierre Zobda-Quitman, Centre Hospitalier Universitaire de Martinique, Fort-de-France, France. 31. Department of Neurology, CHU de Limoges, Hôpital Dupuytren, Limoges, France. 32. Service de Neurologie, Assistance Publique des Hôpitaux de Paris, Hôpital Henri Mondor, Créteil, France. 33. Department of Neurology, CHU de Saint-Étienne, Hôpital Nord, Saint-Étienne Cedex 2, France. 34. Service de Neurologie, Hôpital Maison-Blanche, Centre Hospitalier Universitaire de Reims, Reims, France. 35. CRC SEP and Department of Neurology, Hôpital Bretonneau, CHU de Tours, Tours, France. 36. Service de Neurologie, Centre Hospitalier de Saint-Denis, Saint-Denis, France. 37. Service de Neurologie, Centre Hospitalier de Pontoise, Pontoise, France. 38. Site de la Milétrie, Service de Neurologie, Centre Hospitalier Universitaire de Poitiers, Poitiers, France. 39. Service de Neurologie, Assistance publique des hôpitaux de Paris, Hôpital Bicêtre, Le Kremlin-Bicêtre, France. 40. Service de Neurologie, Centre Hospitalier de Versailles, Hôpital André-Mignot, Le Chesnay, France. 41. Service de Neurologie, Sclérose en Plaques, Pathologies de la Myéline et Neuro-Inflammation, Hôpital Neurologique Pierre Wertheimer, Hospices Civils de Lyon, Lyon/Bron, France. 42. Centre des Neurosciences de Lyon, Observatoire Français de la Sclérose en Plaques, INSERM 1028 et CNRS UMR5292, Lyon, France. 43. Faculté de Médecine Lyon Est, Université Claude Bernard Lyon 1, Lyon, France.
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.
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.