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Review
. 2018 Feb 22:11:1756286418759189.
doi: 10.1177/1756286418759189. eCollection 2018.

Management of multiple sclerosis patients in central European countries: current needs and potential solutions

Thomas Berger  1 , Monika Adamczyk-Sowa  2 , Tünde Csépány  3 , Franz Fazekas  4 , Tanja Hojs Fabjan  5 , Dana Horáková  6 , Zsolt Illes  7 , Eleonóra Klimová  8 , Fritz Leutmezer  9 , Konrad Rejdak  10 , Csilla Rozsa  11 , Saša Šega Jazbec  12 , Jarmila Szilasiová  13 , Peter Turčáni  14 , Marta Vachová  15 , László Vécsei  16 , Eva Havrdová  6
Affiliations
Review

Management of multiple sclerosis patients in central European countries: current needs and potential solutions

Thomas Berger et al. Ther Adv Neurol Disord. .

Abstract

Multiple sclerosis (MS) experts in Europe are facing rapidly rising demands of excellence due to the increasing complexity of MS therapy and management. A central European expert board of MS experts met to identify needs and obstacles with respect to raising quality of MS care in central and Eastern European countries. There are substantial variations across countries regarding delivery of care and its cost structure, as well as access to treatment. To date, Eastern European countries are often less able to afford reimbursement of immunomodulatory agents than Western countries. Overall, approximately 40% of working-age patients are not working due to MS. Costs rise steeply with increasing disability; indirect costs constitute the bulk of the financial burden in patients with severe MS. Magnetic resonance imaging (MRI) assessment is meanwhile obligatory as the diagnostic interface in the management of MS patients. Recommended measures directed at improving quality of care include the collection of patient data in registries, enhanced education of healthcare professionals, implementation of national strategies aiming at reducing regional variation, optimization of approval processes, and removal of administrative barriers. Local partnerships with authorities such as those that represent the interests of employees can contribute to leverage the importance of epidemiological data. The need for education extends to (neuro)radiologists who are responsible for reporting MRI findings in expert quality. Dissemination of the Magnetic Resonance Imaging in MS (MAGNIMS) protocol would be an important step in this context. Also, clinical freedom of choice is rated as essential. Physicians should have access to a range of treatment options due to the complexity of disease. Guidelines such as the upcoming EAN-ECTRIMS clinical practice guideline also aim at providing a basis for argumentation in negotiations with national health authorities.

Keywords: MS registry; access to treatment; burden of disease; multiple sclerosis; quality of care.

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Conflict of interest statement

Conflict of interest statement: Monika Adamczyk-Sowa received compensation for travel, advisory boards, speaker honoraria and consultant fees from Bayer, Biogen, Merck, Novartis, Roche, Sanofi Genzyme, and Teva, as well as support for participation in clinical trials in multiple sclerosis sponsored by Bayer and Biogen. Thomas Berger has participated in the last 12 months in meetings sponsored by, and received honoraria (lectures, advisory boards, consultations) from, pharmaceutical companies marketing treatments for multiple sclerosis: Almirall, Biogen, Celgene, Genzyme, Merck, Novartis, Octapharma, Roche, Sanofi-Aventis and Teva. His institution has received financial support in the last 12 months by unrestricted research grants (Biogen, Novartis, Roche, Sanofi-Aventis and Teva) and for participation in clinical trials in multiple sclerosis sponsored by Alexion, Bayer, Biogen, Merck, Novartis, Octapharma, Roche, Sanofi-Aventis and Teva. Tünde Csépány received speaker honoraria/congress expense compensations from Biogen, Merck Serono, Novartis, Roche, Sanofi Genzyme and Teva. Eva Havrdová received speaker honoraria and consultant fees from Actelion, Biogen, Celgene, Merck Serono, Novartis, Sanofi Genzyme, Roche and Teva, as well as support for research activities from the Czech Ministry of Education project Progres Q27/LF1. Saša Šega Jazbec has received speaker honoraria from Biogen, Genzyme, Merck Serono, Novartis. Dana Horáková was supported by the Czech Ministry of Education project Progres Q27/LF1 and by the Czech Science Foundation GA CR 16-03322S. She also received compensation for travel, speaker honoraria and consultant fees from Bayer, Biogen, Novartis, Merck, Sanofi Genzyme, Roche, and Teva, as well as support for research activities from Biogen. Tanja Hojs Fabjan received speaker honoraria and consultant fees from Biogen, Genzyme, Lek, Novartis, and for participation in trials in multiple sclerosis sponsored by Bayer and Biogen. Zsolt Illes has received research support from Biogen, Lundbeckfonden, Merck-Serono, Sanofi-Aventis/Genzyme and travel grants, consultant fees and speaking fees from Bayer Healthcare, Biogen, Merck Serono, Novartis Sanofi-Aventis/Genzyme and Teva. Eleonóra Klimová has participated in the last 12 months in meetings sponsored by, and received honoraria (lectures, advisory boards) from, Biogen, Novartis and Teva, and for participation in clinical studies from Biogen and Novartis. Csilla Rozsa has received personal fees from Biogen, Genzyme, Roche, Novartis and Teva. Fritz Leutmezer has received speaker honoraria, consultant fees, unrestricted research grants and clinical trial honoraria from Actelion, Biogen, Genzyme, Merck, Novartis, Octapharma, Roche, Sanofi-Aventis and Teva. Saša Šega Jazbec has received speaker honoraria from Biogen, Genzyme, Merck Serono, Novartis Jarmila Szilasiová has participated in the last 12 months in meetings sponsored by, and received honoraria (advisory boards, lectures, consultations) from, pharmaceutical companies marketing treatments for multiple sclerosis: Biogen, Genzyme, Merck, Novartis, Roche, Sanofi Aventis, Teva. Peter Turčáni received honoraria (lectures, advisory boards, consultations) from Biogen, Merck Serono, Novartis, Roche, Sanofi Genzyme and Teva, as well as support for research from Biogen, Novartis and Teva. László Vécsei has received honoraria (consultations, lectures, chair of sessions) from Biogen, Merck Serono, Novartis, Sanofi-Aventis/Genzyme, Roche and Teva.

Figures

Figure 1.
Figure 1.
Effect of disease progression in multiple sclerosis patients on quality of life (left) and financial burden (right) in 16 European countries. Source: Kobelt et al. EDSS, Expanded Disability Status Scale.
Figure 2.
Figure 2.
Cost structure in the Multiple Sclerosis Cost of Illness (MS COI) study in the total study population (n = 16,808). Kobelt et al. DMDs, disease-modifying drugs.
See this image and copyright information in PMC

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