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Vlasov Ia.V.

Kafedra nevrologii i neĭrokhirurgii Samarskogo gosudarstvennogo meditsinskogo universiteta

Churakov M.V.

Nauchno-proizvodstvennyĭ kompleks "Sotsial'naia mekhanika", Samara

Kurapov M.A.

Kafedra nevrologii i neĭrokhirurgii Samarskogo gosudarstvennogo meditsinskogo universiteta

Gromova T.N.

Kafedra nevrologii i neĭrokhirurgii Samarskogo gosudarstvennogo meditsinskogo universiteta

Popova E.V.

Kafedra nervnykh bolezneĭ fakul'teta poslevuzovskogo professional'nogo obrazovaniia vracheĭ Moskovskoĭ meditsinskoĭ akademii im. I.M. Sechenova

Boĭko O.V.

Moskovskiĭ gorodskoĭ tsentr rasseiannogo skleroza na baze Gorodskoĭ klinicheskoĭ bol'nitsy #11

Spirin N.N.

Kafedra nervnykh bolezneĭ i meditsinskoĭ genetiki s kursom neĭrokhirurgii Iaroslavskoĭ gosudarstvennoĭ meditsinskoĭ akademii

Sivertseva S.A.

Tiumenskiĭ oblastnoĭ tsentr rasseiannogo skleroza

Bel'skaia G.N.

Kafedra nevrologii fakul'teta poslevuzovskogo i dopolnitel'nogo professional'nogo obrazovaniia GBOU VPO "Iuzhno-Ural'skiĭ gosudarstvennykh meditsinskiĭ universitet" Minzdrava Rossii, Cheliabinsk

Malkova N.A.

Novosibirskiĭ okruzhnoĭ tsentr rasseiannogo skleroza

Khabirov F.A.

Kazanskaia gosudarstvennaia meditsinskaia akademiia Minzdravsotsrazvitiia Rossii;
Respublikanskiĭ kliniko-diagnosticheskiĭ tsentr po demieliniziruiushchim zabolevaniiam Ministerstva zdravookhraneniia Respubliki Tatarstan, Kazan'

Khaĭbullin T.I.

Kazanskaia gosudarstvennaia meditsinskaia akademiia Minzdravsotsrazvitiia Rossii;
Respublikanskiĭ kliniko-diagnosticheskiĭ tsentr po demieliniziruiushchim zabolevaniiam Ministerstva zdravookhraneniia Respubliki Tatarstan, Kazan'

Kotov S.V.

Moskovskiĭ oblastnoĭ nauchno-issledovatel'skiĭ klinicheskiĭ institut im. M.F. Vladimirskogo

Greshnova I.V.

GUZ "Ul'ianovskaia oblastnaia klinicheskaia bol'nitsa", Ul'ianovsk

Ivashinenkova E.I.

City Emergency Hospital №25, Volgograd, Russia

Bakalova M.A.

Regional Clinical Hospital of №1, Voronezh, Russia

Iampol'skaia-Gosteva I.A.

GBUZ "Orenburgskaia oblastnaia klinicheskaia bol'nitsa", Orenburg

Boĭko A.N.

KGBUZ "Krasnoiarskiĭ kraevoĭ Tsentr po profilaktike i bor'be so SPID i infektsionnymi zabolevaniiami"

Primary-progressive multiple sclerosis in Russia: a medical-sociological study involving patients and neurologists

Authors:

Vlasov Ia.V., Churakov M.V., Kurapov M.A., Gromova T.N., Popova E.V., Boĭko O.V., Spirin N.N., Sivertseva S.A., Bel'skaia G.N., Malkova N.A., Khabirov F.A., Khaĭbullin T.I., Kotov S.V., Greshnova I.V., Ivashinenkova E.I., Bakalova M.A., Iampol'skaia-Gosteva I.A., Boĭko A.N.

More about the authors

Journal: S.S. Korsakov Journal of Neurology and Psychiatry. 2018;118(8‑2): 40‑46

DOI: 10.17116/jnevro201811808240

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Table of contents

PRIMARY-PROGRESSIVE MULTIPLE SCLEROSIS IN RUSSIA: A MEDICAL-SOCIOLOGICAL STUDY INVOLVING PATIENTS AND NEUROLOGISTS
PRIMARY-PROGRESSIVE MULTIPLE SCLEROSIS IN RUSSIA: A MEDICAL-SOCIOLOGICAL STUDY INVOLVING PATIENTS AND NEUROLOGISTS

To cite this article:

Vlasov IaV, Churakov MV, Kurapov MA, et al. . Primary-progressive multiple sclerosis in Russia: a medical-sociological study involving patients and neurologists. S.S. Korsakov Journal of Neurology and Psychiatry. 2018;118(8‑2):40‑46. (In Russ.)
https://doi.org/10.17116/jnevro201811808240

Подписка 2026 Журнал неврологии и психиатрии им. С.С. Корсакова. Спецвыпуски (S.S. Korsakov Journal of Neurology and Psychiatry (special issues))
 
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Abstract:

The main results of a medical-sociological study aimed at the evaluation of the level of satisfaction with treatment in patients with primary progressive multiple sclerosis (PPMS) are presented. The survey was conducted in 19 regions of the Russian Federation and involved 437 patients with confirmed diagnosis of PPMS and 80 neurologists specialized in multiple sclerosis. The research was carried out by the All-Russian Public Organization of Disabled People with Multiple Sclerosis with the participation of the Russian Committee for Treatment and Research in Multiple Sclerosis. This is the first medical-sociological study in the Russian Federation involving patients with PPMS and neurologists. The study revealed typical medical and social problems patients with PPMS faced. A significant decrease in quality-of-life of PPMS patients was shown.

Keywords:

primary progressive multiple sclerosis
survey
quality of life
quality of medical care

Authors:

Vlasov Ia.V.

Kafedra nevrologii i neĭrokhirurgii Samarskogo gosudarstvennogo meditsinskogo universiteta

Churakov M.V.

Nauchno-proizvodstvennyĭ kompleks "Sotsial'naia mekhanika", Samara

Kurapov M.A.

Kafedra nevrologii i neĭrokhirurgii Samarskogo gosudarstvennogo meditsinskogo universiteta

Gromova T.N.

Kafedra nevrologii i neĭrokhirurgii Samarskogo gosudarstvennogo meditsinskogo universiteta

Popova E.V.

Kafedra nervnykh bolezneĭ fakul'teta poslevuzovskogo professional'nogo obrazovaniia vracheĭ Moskovskoĭ meditsinskoĭ akademii im. I.M. Sechenova

Boĭko O.V.

Moskovskiĭ gorodskoĭ tsentr rasseiannogo skleroza na baze Gorodskoĭ klinicheskoĭ bol'nitsy #11

Spirin N.N.

Kafedra nervnykh bolezneĭ i meditsinskoĭ genetiki s kursom neĭrokhirurgii Iaroslavskoĭ gosudarstvennoĭ meditsinskoĭ akademii

Sivertseva S.A.

Tiumenskiĭ oblastnoĭ tsentr rasseiannogo skleroza

Bel'skaia G.N.

Kafedra nevrologii fakul'teta poslevuzovskogo i dopolnitel'nogo professional'nogo obrazovaniia GBOU VPO "Iuzhno-Ural'skiĭ gosudarstvennykh meditsinskiĭ universitet" Minzdrava Rossii, Cheliabinsk

Malkova N.A.

Novosibirskiĭ okruzhnoĭ tsentr rasseiannogo skleroza

Khabirov F.A.

Kazanskaia gosudarstvennaia meditsinskaia akademiia Minzdravsotsrazvitiia Rossii;
Respublikanskiĭ kliniko-diagnosticheskiĭ tsentr po demieliniziruiushchim zabolevaniiam Ministerstva zdravookhraneniia Respubliki Tatarstan, Kazan'

Khaĭbullin T.I.

Kazanskaia gosudarstvennaia meditsinskaia akademiia Minzdravsotsrazvitiia Rossii;
Respublikanskiĭ kliniko-diagnosticheskiĭ tsentr po demieliniziruiushchim zabolevaniiam Ministerstva zdravookhraneniia Respubliki Tatarstan, Kazan'

Kotov S.V.

Moskovskiĭ oblastnoĭ nauchno-issledovatel'skiĭ klinicheskiĭ institut im. M.F. Vladimirskogo

Greshnova I.V.

GUZ "Ul'ianovskaia oblastnaia klinicheskaia bol'nitsa", Ul'ianovsk

Ivashinenkova E.I.

City Emergency Hospital №25, Volgograd, Russia

Bakalova M.A.

Regional Clinical Hospital of №1, Voronezh, Russia

Iampol'skaia-Gosteva I.A.

GBUZ "Orenburgskaia oblastnaia klinicheskaia bol'nitsa", Orenburg

Boĭko A.N.

KGBUZ "Krasnoiarskiĭ kraevoĭ Tsentr po profilaktike i bor'be so SPID i infektsionnymi zabolevaniiami"

Close metadata

References:

  1. Ebers GC. Natural history of primary progressive multiple sclerosis. Multiple sclerosis. 2004;10(suppl 1):8-13.
  2. Popova EV, Boyko AN, Barabanova MA, Antipova LN, Bakhtiyarova KZ, Belova AN, Solovieva VS, Belskaya GN, Lukashevich IG, Nikolaeva LI, Volkova LI, Turova EL, Kraeva AV, Goncharova ZA, Malkova NA, Poverennova IE, Sivertseva SA, Zhelnin AV, Trushnikova TN, Khabirov FA, Khaibullin TI. Primary progressive multiple sclerosis: current issues of timely diagnosis. Zhurnal Nevrologii i Psikhiatrii im. S.S. Korsakova (Specwipusk «Rassejanniej skleros»). 2017;10(2):35-40. (In Russ.) https://doi.org/10.17116/jnevro201711710235-40
  3. Kutzelnigg A. Cortical demyelination and diffuse white matter injury in multiple sclerosis. Brain. 2005;128(11):2705-2712. https://doi.org/10.1093/brain/awh641
  4. Miller DH, Leary SM. Primary-progressive multiple sclerosis. Lancet Neurol. 2007;6:903-912.
  5. Pender M. The pathogenesis of primary progressive multiple sclerosis: antibody-mediated attack and no repair? J Clin Neurosc. 2004;11(7):689-692. https://doi.org/10.1016/j.jocn.2003.12.013
  6. Campbell E, Coulter EH, Mattison PG, Miller L, McFadyen A, Paul L. Physiotherapy rehabilitation for people with progressive multiple sclerosis: a systematic review. Arch Phys Med Rehabil. 2015;97:141-151.
  7. Montalban X, Hauser SL, Kappos L, Arnold DL, Bar-Or A, Comi G, de Seze J, Giovannoni G, Hartung HP, Hemmer B, Lublin F, Rammohan KW, Selmaj K, Traboulsee A, Sauter A, Masterman D, Fontoura P, Belachew S, Garren H, Mairon N, Chin P, Wolinsky JS; ORATORIO Clinical Investigators. Ocrelizumab versus Placebo in Primary Progressive Multiple Sclerosis. N Engl J Med. 2017;376(3):209-220.
  8. Campbell E, Coulter EH, Mattison P, McFadyen A, Miller L, Paul L. Access to and Use of Clinical Services and Disease-Modifying Therapies by People with Progressive Multiple Sclerosis in the United Kingdom. Int J MS Care. 2017;19(6):275-282. https://doi.org/10.7224/1537-2073.2017-022
  9. Holland NJ, Schneider DM, Rapp R, Kalb RC. Meeting the needs of people with primary progressive multiple sclerosis, their families, and the health-care community. Int J MS Care. 2011;13:65-74.
  10. Simeoni MC, Auquier P, Fernandez O, Flachenecker P, Stecchi S, Constantinescu CS, Idiman E, Boyko A, Beiske AG, Vollmer T, Triantafyllou N, O’Connor P, Barack Y, Biermann L, Cristiano E, Atweh S, Patrick DL, Ammoury N, Beresniak A, Pelletier J. Validation of the multiple sclerosis international quality of life questionnaire. Mult Scler. 2008;14:219-230.
  11. Fernández O, Baumstarck-Barrau K, Simeoni MC, Auquier P; Boyko A. Patient characteristics and determinants of quality of life in an international population with multiple sclerosis: assessment using the MusiQoL and SF-36 questionnaires. Mult Scler. 2011;17(10):1238-1249.
  12. Boyko AN, Boyko OV, Chitryi AV. Study iof the Quality of Life of patients with MS using MusiQol questionnaire: the data of multicentral study in Russia. Materials of the X All-Russian Congress of Neurologists. Nizhniy Novgorod: Darst Group; 2012. (In Russ.)
  13. Boĭko OV, Popova EV, Boĭko AN. Quality of life of patients receiving long-term treatment with first-line disease-modifying drugs: results of a Russian multicenter study using MusiQoL. Zhurnal Nevrologii i Psikhiatrii im. S.S. Korsakova («Specwipusk Rassejanniej skleros»). 2013;10(2):86-92. (In Russ.)
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