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Secondary progressive sclerosis in Russia, medical and social characteristics of patients and urgent tasks of therapy

https://doi.org/10.33667/2078-5631-2021-3-7-13

Abstract

Currently, it is possible to treat secondary progressive multiple sclerosis (SPMS). This is the most unfavorable type of multiple sclerosis (MS) and the article provides a medical and social analysis of MS course at this group of patients. There is evidence that these patients are highly socialized members of society, usually family members, so their non-participation in socially useful work significantly affects the whole life of society. Many of them receive pathogenetic treatment drugs that do not work at this stage of MS. That is, the large cost of purchasing medicines not only does not help these patients, but also is an irrational expenditure of public funds.

About the Authors

Ya. V. Vlasov
Samara State Medical University;All-Russian Public Organization of Disabled People – Patients with Multiple Sclerosis
Russian Federation


N. G. Polyarnaya
Centre of Humanitarian technologies and research 'Social Dynamics'
Russian Federation


T. A. Fomina
Centre of Humanitarian technologies and research 'Social Dynamics'
Russian Federation


N. Yu. Lasch
Pirogov Russian National Research Medical University
Russian Federation


M. R. Guseva
Pirogov Russian National Research Medical University
Russian Federation


A. N. Boyko
Pirogov Russian National Research Medical University; Russian Committee of Researchers of Multiple Sclerosis; Institute of Clinical Neurology and Neuroimmunology Department of Federal Brain and Neurotechnologies Center, FMBA
Russian Federation


References

1. Vlasov YV, Churakov MV, Kurapov MA, Gromova TN, Popova EV, Boyko OV, Spirin NN, Sivertseva SA, Belskaya GN, Malkova NA, Habirov FA, Haybullin TI, Kotov SV, Greshnova IV, Ivashinenkova EI, Bakalova MA, Yampolskaya-Gosteva IA, Boyko AN. [Primary-progressive multiple sclerosis in Russia: a medical-sociological study involving patients and neurologists] Zh Nevrol Psikhiatr Im SS Korsakov. 2018; 8 (2): 40–46. DOI: 10.17116/jnevro201811808240. Russian.

2. Boyko A. Kobelt G, Berg J, Boyko O, Popova E, Capsa D, Eriksson J. New insights into the burden and costs of multiple sclerosis in Europe: Results for Russia. Mult Sler 2017, 23 (2S): 155–165 DOI: 10.1177/ 1352458517708668.

3. Boyko A, Melnikov M. Prevalence and Incidence of Multiple Sclerosis in Russian Federation: 30 Years of Studies. Brain Sci. 2020; 10 (5), E 305. DOI: 10.3390/ brainsci10050305.

4. Compston A, Coles A. Multiple sclerosis. Lancet. 2008; 372 (9648): 1502–1517. DOI: 10.1016/S0140–6736(08)61620–7.

5. Davies F, Edwards A, Brain K, Edwards M, Jones R, Wallbank R, Robertson NP, Wood F. 'You are just left to get on with it': qualitative study of patient and carer experiences of the transition to secondary progressive multiple sclerosis. BMJ Open. 2015; 5 (7): e007674.

6. Davies F, Wood F, Brain KE, Edwards M, Jones R, Wallbank R, Robertson NP, Edwards A. The Transition to Secondary Progressive Multiple Sclerosis: An Exploratory Qualitative Study of Health Professionals' Experiences. Int J MS Care. 2016; 18 (5): 257–264. DOI: 10.7224/1537–2073.2015–062.

7. Giovannoni, G., Butzkueven, H., Dhib-Jalbut, S., Hobart, J., Kobelt, G., Pepper, G., Sormani, M.P., Thalheim, C., Traboulsee, A., Vollmer, T. Brain health: time matters in multiple sclerosis. Mult Scler Relat Disord 2016, 9 Suppl 1, S5–S48. DOI: 10.1016/j.msard.2016.07.003.

8. Howard J, Trevick S, Younger DS. Epidemiology of Multiple Sclerosis. Neurol Clin. 2016; 34 (4): 919–939. DOI: 10.1016/j.ncl.2016.06.016.

9. Kapoor R, Ho PR, Campbell N, Chang I, Deykin A, Forrestal F, Lucas N, Yu B, Arnold DL, Freedman MS, Goldman MD, Hartung HP, Havrdová EK, Jeffery D, Miller A, Sellebjerg F, Cadavid D, Mikol D, Steiner D; ASCEND investigators. Effect of natalizumab on disease progression in secondary progressive multiple sclerosis (ASCEND): a phase 3, randomised, double-blind, placebo-controlled trial with an open-label extension. Lancet Neurol. 2018; 17 (5): 405–415. DOI: 10.1016/S1474–4422(18)30069–3.

10. Kappos L, Weinshenker B, Pozzilli C, Thompson AJ, Dahlke F, Beckmann K, Polman C, McFarland H; European (EU-SPMS) Interferon beta 1b in Secondary Progressive Multiple Sclerosis Trial Steering Committee and Independent Advisory Board; North American (NA-SPMS) Interferon beta 1b in Secondary Progressive Multiple Sclerosis Trial Steering Committee and Independent Advisory Board.Interferon beta 1b in secondary progressive MS: a combined analysis of the two trials. Neurology 2004; 63 (10): 1779–1787. DOI: 10.1212/01.wnl.0000145561.08973.4f.

11. Kappos L, Bar-Or A, Cree BAC, Fox RJ, Giovannoni G, Gold R, Vermersch P, Arnold DL, Arnould S, Scherz T, Wolf C, Wallström E, Dahlke F; EXPAND Clinical Investigators. Siponimod versus placebo in secondary progressive multiple sclerosis (EXPAND): a double-blind, randomised, phase 3 study. Lancet. 2018; 391 (10127): 1263–1273. DOI: 10.1016/S0140–6736(18)30475–6.

12. Kawachi I, Lassmann H. Neurodegeneration in multiple sclerosis and neuromyelitis optica. J Neurol Neurosurg Psychiatry. 2017; 88 (2): 137–145. DOI: 10.1136/jnnp 2016–313300.

13. Klineova S, Lublin FD. Clinical Course of Multiple Sclerosis. Cold Spring Harb Perspect Med. 2018; 8 (9): a028928. DOI: 10.1101/cshperspect.a028928.

14. Kobelt G., Thompson A., Berg J., Gannedahl M., Eriksson J. New insights into the burden and costs of multiple sclerosis in Europe. Mult Scler 2017, 23 (8), 1123–1136, DOI: 10.1177/1352458517694432.

15. Lorscheider J, Buzzard K, Jokubaitis V, Spelman T, Havrdova E, Horakova D, Trojano M, Izquierdo G, Girard M, Duquette P, Prat A, Lugaresi A, Grand'Maison F, Grammond P, Hupperts R, Alroughani R, Sola P, Boz C, Pucci E, Lechner-Scott J, Bergamaschi R, Oreja-Guevara C, Iuliano G, Van Pesch V, Granella F, Ramo-Tello C, Spitaleri D, Petersen T, Slee M, Verheul F, Ampapa R, Amato MP, McCombe P, Vucic S, Sánchez Menoyo JL, Cristiano E, Barnett MH, Hodgkinson S, Olascoaga J, Saladino ML, Gray O, Shaw C, Moore F, Butzkueven H, Kalincik T; MSBase Study Group. Defining secondary progressive multiple sclerosis. Brain. 2016; 139 (Pt 9): 2395–405. DOI: 10.1093/brain/aww173.

16. Lublin, F.D., Reingold, S.C., Cohen, J.A., Cutter, G.R., Sorensen, P.S., Thompson, A.J., Wolinsky, J.S., Balcer, L.J., Banwell, B., Barkhof, F., Bebo, B., Jr., Calabresi, P.A., Clanet, M., Comi, G., Fox, R.J., Freedman, M.S., Goodman, A.D., Inglese, M., Kappos, L., Kieseier, B.C., Lincoln, J.A., Lubetzki, C., Miller, A.E., Montalban, X., O'Connor, P.W., Petkau, J., Pozzilli, C., Rudick, R.A., Sormani, M.P., Stuve, O., Waubant, E., Polman, C.H. Defining the clinical course of multiple sclerosis: the 2013 revisions. Neurology 2014, 83 (3), 278–286. DOI: 10.1212/WNL.0000000000000560.

17. Montalban X, Gold R, Thompson AJ, Otero-Romero S, Amato MP, Chandraratna D, Clanet M, Comi G, Derfuss T, Fazekas F, Hartung HP, Havrdova E, Hemmer B, Kappos L, Liblau R, Lubetzki C, Marcus E, Miller DH, Olsson T, Pilling S, Selmaj K, Siva A, Sorensen PS, Sormani MP, Thalheim C, Wiendl H, Zipp F. ECTRIMS/EAN Guideline on the pharmacological treatment of people with multiple sclerosis. Mult Scler. 2018; 24 (2): 96–120. DOI: 10.1177/1352458517751049.

18. Panitch H, Miller A, Paty D, Weinshenker B. Interferon beta 1b in secondary progressive MS: results from a 3-year controlled study. Neurology. 2004; 63 (10): 1788–1795. DOI: 10.1212/01.wnl.0000146958.77317.3e.

19. Quintana FJ, Patel B, Yeste A, Nyirenda M, Kenison J, Rahbari R, Fetco D, Hussain M, O'Mahony J, Magalhaes S, McGowan M, Johnson T, Rajasekharan S, Narayanan S, Arnold DL, Weiner HL, Banwell B, Bar-Or A; Canadian Pediatric Demyelinating Disease Network. Epitope spreading as an early pathogenic event in pediatric multiple sclerosis. Neurology. 2014; 83 (24): 2219–2226. DOI: 10.1212/WNL.0000000000001066.

20. Rivera VM, Jeffery DR, Weinstock-Guttman B, Bock D, Dangond F. Results from the 5-year, phase IV RENEW (Registry to Evaluate Novantrone Effects in Worsening Multiple Sclerosis) study. BMC Neurol. 2013; 13: 80. DOI: 10.1186/1471–2377–13–80.

21. Stampanoni Bassi M, Iezzi E, Pavone L, Mandolesi G, Musella A, Gentile A, Gilio L, Centonze D, Buttari F. Modeling Resilience to Damage in Multiple Sclerosis: Plasticity Meets Connectivity. Int J Mol Sci. 2019; 21 (1): 143. DOI: 10.3390/ijms21010143.

22. Thompson, A.J., Banwell, B.L., Barkhof, F., Carroll, W.M., Coetzee, T., Comi, G., Correale, J., Fazekas, F., Filippi, M., Freedman, M.S., Fujihara, K., Galetta, S.L., Hartung, H.P., Kappos, L., Lublin, F.D., Marrie, R.A., Miller, A.E., Miller, D.H., Montalban, X., Mowry, E.M., Sorensen, P.S., Tintore, M., Traboulsee, A.L., Trojano, M., Uitdehaag, B.M.J., Vukusic, S., Waubant, E., Weinshenker, B.G., Reingold, S.C., Cohen, J.A., 2018a. Diagnosis of multiple sclerosis: 2017 revisions of the McDonald criteria. Lancet Neurol 17 (2), 162–173.

23. Thompson, A.J., Baranzini, S.E., Geurts, J., Hemmer, B., Ciccarelli, O. Multiple sclerosis. Lancet 2018b, 391(10130), 1622–1636.

24. Vanderlugt CL, Miller SD. Epitope spreading in immune-mediated diseases: implications for immunotherapy. Nat Rev Immunol. 2002; 2 (2): 85–95. DOI: 10.1038/nri724.

25. Woo DA, Collins RH, Rossman HS, Stüve O, Frohman EM. Mitoxantrone-associated leukemia in multiple sclerosis: case studies. Int J MS Care. 2008; 10: 41–46. DOI: 10.7224/1537–2073–10.2.41.

26. Ziemssen T, Piani-Meier D, Bennett B, Johnson Ch, Tinsley K, Trigg A, Hach Th, Dahlke Fr, Tomic D, Tolley Ch, Freedman MS. A Physician-Completed Digital Tool for Evaluating Disease Progression (Multiple Sclerosis Progression Discussion Tool): Validation Study. J Med Internet Res. 2020; 22 (2): e16932. DOI: 10.2196/1693.


Review

For citations:


Vlasov Ya.V., Polyarnaya N.G., Fomina T.A., Lasch N.Yu., Guseva M.R., Boyko A.N. Secondary progressive sclerosis in Russia, medical and social characteristics of patients and urgent tasks of therapy. Medical alphabet. 2021;(3):7-13. (In Russ.) https://doi.org/10.33667/2078-5631-2021-3-7-13

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ISSN 2078-5631 (Print)
ISSN 2949-2807 (Online)