vspВопросы современной педиатрииCurrent Pediatrics1682-55271682-5535Издательство «ПедиатрЪ»10.15690/vsp.v12i6.880vsp-262Research ArticleВ ПОМОЩЬ ВРАЧУA DOCTOR’S AIDОПТИМИЗАЦИЯ МЕДИЦИНСКОЙ ПОМОЩИ ДЕТЯМ С РЕВМАТИЧЕСКИМИ БОЛЕЗНЯМИ В ЭПОХУ ГЕННО-ИНЖЕНЕРНОЙ БИОЛОГИЧЕСКОЙ ТЕРАПИИ (НА ПРИМЕРЕ РЕСПУБЛИКИ БАШКОРТОСТАН)OPTIMIZATION OF HEALTHCARE FOR CHILDREN WITH RHEUMATIC DISEASES IN EPOCH OF TREATMENT WITH GENETICALLY ENGINEERED BIOLOGICAL AGENTS (BY THE EXAMPLE OF THE REPUBLIC OF BASHKORTOSTAN)ШебаевГ. А.ShebaevG. A.vmalievsky@mail.ruШакироваР. М.ShakirovaR. M.vmalievsky@mail.ruМалиевскийВ. А.MalievskiiV. A.

Malievskiy Viktor Arturovich, Doctor of Medical Science, Professor of the Department of Hospital Pediatrics

vmalievsky@mail.ruАхметшинР. З.AkhmetshinR. Z.vmalievsky@mail.ruМинистерство здравоохранения Республики Башкортостан, Уфа, Республика БашкортостанРоссияMinistry of Healthcare of the Republic of Bashkortostan, Ufa, Republic of BashkortostanRussian FederationБашкирский государственный медицинский университет, Уфа Республика Башкортостан,РоссияBashkir State Medical University, Ufa, Republic of BashkortostanRussian FederationРеспубликанская детская клиническая больница, Уфа Республика БашкортостанРоссияRepublican Pediatric Clinical Hospital, Ufa, Republic of BashkortostanRussian Federation201307122013126Вопросы современной педиатрии8589Copyright © Шебаев Г.А., Шакирова Р.М., Малиевский В.А., Ахметшин Р.З., 20132013Шебаев Г.А., Шакирова Р.М., Малиевский В.А., Ахметшин Р.З.Shebaev G.A., Shakirova R.M., Malievskii V.A., Akhmetshin R.Z.Данная работа распространяется под лицензией Creative Commons Attribution 4.0.This work is licensed under a Creative Commons Attribution 4.0 License.https://vsp.spr-journal.ru/jour/article/view/262

Ювенильные артриты — наиболее распространенные хронические ревматические заболевания у детей, приводящие к быстрому развитию инвалидизации больных, снижению качества их жизни, социальной и психологической дезадаптации. В большинстве случаев основу патогенетического лечения ювенильных артритов составляет назначение метотрексата, при неэффективности или непереносимости которого показаны генно-инженерные биологические препараты. Цель исследования: разработать мероприятия по оптимизации медицинской помощи детям с ювенильными артритами на основании изучения их медико-социальных и экономических последствий на региональном уровне. Материалы и методы: эпидемиологическое исследование включало в себя скринирующее анкетирование 43 907 детей с последующим обследованием лиц, у которых отмечалась припухлость суставов в течение 1 года. В Республике Башкортостан с 2003 г. осуществляется формирование регионального регистра детей с ювенильными артритами, а с 2011 — регионального компонента федерального online регистра. Определены распространенность ювенильных артритов, их социально-экономические последствия, «стоимость болезни». Всего зарегистрировано 474 ребенка с ювенильными артритами, из них 62 получают терапию генно-инженерными биологическими препаратами. Результаты: определен порядок лекарственного обеспечения детей с ювенильными артритами — стационарное лечение осуществляется в рамках оказания специализированной, в т.ч. высокотехнологичной, медицинской помощи, для амбулаторного лечения генно-инженерные биологические препараты закупают за счет средств республиканского бюджета в рамках социальной поддержки отдельных групп населения («региональная льгота»).

Juvenile arthritis — is the most common chronic rheumatic disorder among children, which causes rapid development of disability, decrease of the quality of life, social and psychological dysadaptation. In the majority of cases the main pathogenetic treatment is methotrexate, however when there is resistance or intolerability of this drug, therapy with genetically engineered biological agents is indicated. Aim: to develop measures of optimization of medical support for children with juvenile arthritis according to analysis of its medical and social as well as economic consequences at regional level. Patients and methods: the epidemiologic study included screening questionnaires of 43 907 children with subsequent examination of those of them with inflammatory swelling of the joints during 1 year. Formation of regional registry of children with juvenile arthritis has been performed in the Republic of Bashkortostan since 2003, regional component of the federal on-line registry has been functioning since 2011. The prevalence of juvenile arthritis, its social and economic consequences and the «costs of the disease» were established. In total there were registered 474 patients with juvenile arthritis, among them 62 receive treatment with genetically engineered biological agents. Results: an order of providing the children with juvenile arthritis with medical agents is established — in-patient treatment is performed within the framework of specialized (including high-tech) medical care; genetically engineered biological drugs for out-patient therapy are purchased at the expense of republican state resources in the network of the social support of certain population groups («regional benefit»).

детиювенильные артритыНациональный регистрстоимость леченияchildrenjuvenile arthritisNational Registrycosts of treatmentReferencesCassidy J., Petty R. Textbook of Pediatric Rheumatology. Philadelphia: Saunders Elsevier. 2011. 794 p.Cassidy J., Petty R. Textbook of Pediatric Rheumatology. Philadelphia: Saunders Elsevier. 2011. 794 p.Malievskiy V. A. Yuvenilnye artrity: epidemiologiya, medikosotsialnye i ekonomicheskiye posledstviya, kachestvo zhizni [Juvenile arthritis: epidemiology, the medical, social and economic impact, and the quality of life]. Avtoreferat-dissertatsiya doktora meditsinskikh nauk [Autoabstract-thesis of Doctor of Medical Science]. Moscow, 2006. 38 p.Malievskiy V. A. Yuvenilnye artrity: epidemiologiya, medikosotsialnye i ekonomicheskiye posledstviya, kachestvo zhizni [Juvenile arthritis: epidemiology, the medical, social and economic impact, and the quality of life]. Avtoreferat-dissertatsiya doktora meditsinskikh nauk [Autoabstract-thesis of Doctor of Medical Science]. Moscow, 2006. 38 p.Alekseeva E. I., Litvitskiy P. F. Yuvenilniy revmatoidniy artrit: etiologiya, patogenez, klinika, algoritmy diagnostiki i lecheniya [Juvenile rheumatoid arthritis: etiology, pathogenesis, clinical features, diagnosis and treatment algorithms]. Moscow, Vedi Publ., 2007. 368 p.Alekseeva E. I., Litvitskiy P. F. Yuvenilniy revmatoidniy artrit: etiologiya, patogenez, klinika, algoritmy diagnostiki i lecheniya [Juvenile rheumatoid arthritis: etiology, pathogenesis, clinical features, diagnosis and treatment algorithms]. Moscow, Vedi Publ., 2007. 368 p.Nasonov E. L. Metotreksat: perspektivy primeneniya v revmatologii [Methotrexate: Application prospects in rheumatology]. Moscow, Filomatis Publ., 2005. 200 p.Nasonov E. L. Metotreksat: perspektivy primeneniya v revmatologii [Methotrexate: Application prospects in rheumatology]. Moscow, Filomatis Publ., 2005. 200 p.Alekseeva E. I., Valieva S. I., Bzarova T. M., Denisova R. V. Metotreksat — “zolotoy standart” lecheniya yuvenilnogo revmatoidnogo artrita [Methotrexate: “Gold standard” of juvenile rheumatoid arthritis treatment]. Voprosy sovremennoy pediatrii — Current Pediatrics. 2011; 10 (1): 42–49.Alekseeva E. I., Valieva S. I., Bzarova T. M., Denisova R. V. Metotreksat — “zolotoy standart” lecheniya yuvenilnogo revmatoidnogo artrita [Methotrexate: “Gold standard” of juvenile rheumatoid arthritis treatment]. Voprosy sovremennoy pediatrii — Current Pediatrics. 2011; 10 (1): 42–49.Rodionovskaya S. R., Nikishina I. P. “Era metotreksata” v detskoy revmatologii [“The era of methotrexate” in pediatric rheumatology]. Voprosy sovremennoy pediatrii — Current Pediatrics. 2006; 5 (3): 31–39.Rodionovskaya S. R., Nikishina I. P. “Era metotreksata” v detskoy revmatologii [“The era of methotrexate” in pediatric rheumatology]. Voprosy sovremennoy pediatrii — Current Pediatrics. 2006; 5 (3): 31–39.Sigidin Ya. A., Lukina G. V. Biologicheskaya terapiya v revmatologii [Biological therapy in rheumatology]. Moscow, 2007. 179 p.Sigidin Ya. A., Lukina G. V. Biologicheskaya terapiya v revmatologii [Biological therapy in rheumatology]. Moscow, 2007. 179 p.Baranov A. A., Alekseeva E. I., Valieva S. I. et al. Biologicheskaya terapiya v pediatricheskoy revmatologii [Biological therapy in pediatric rheumatology]. Voprosy sovremennoy pediatrii — Current Pediatrics. 2011; 10 (1): 5–16.Baranov A. A., Alekseeva E. I., Valieva S. I. et al. Biologicheskaya terapiya v pediatricheskoy revmatologii [Biological therapy in pediatric rheumatology]. Voprosy sovremennoy pediatrii — Current Pediatrics. 2011; 10 (1): 5–16.Hofer M., Southwood T. Classification of childhood arthritis. Best Pract. Res. Clin. Rhematol. 2002; 16 (3): 379–396.Hofer M., Southwood T. Classification of childhood arthritis. Best Pract. Res. Clin. Rhematol. 2002; 16 (3): 379–396.Order of the Ministry of Health and Social Development of the Russian Federation from December 6, 2010 No. 1074n “On approval of medical assistance for children with rheumatic diseases.”Order of the Ministry of Health and Social Development of the Russian Federation from December 6, 2010 No. 1074n “On approval of medical assistance for children with rheumatic diseases.”Avksentyeva M. V., Vorobyov P. A., Gerasimov V. B. et al. Ekonomicheskaya otsenka effektivnosti lekarstvennoy terapii (farmako-ekonomicheskiy analiz) [Economic evaluation of the drug therapy effectiveness (pharmacoeconomic analysis)]. Moscow, Newdiamed Publ., 2000. 80 p.Avksentyeva M. V., Vorobyov P. A., Gerasimov V. B. et al. Ekonomicheskaya otsenka effektivnosti lekarstvennoy terapii (farmako-ekonomicheskiy analiz) [Economic evaluation of the drug therapy effectiveness (pharmacoeconomic analysis)]. Moscow, Newdiamed Publ., 2000. 80 p.Kuzmina N. N., Nikishina I. P., Shaykov A. V. et al. Rossyskiy adaptirovanniy variant oprosnikov dlya otsenki kachestva zhizni i sostoyaniya zdorovya detey s yuvenilnymi khronicheskimi artritami [Russian adapted version of questionnaire for the assessment of life quality and health status of children with juvenile chronic arthritis]. Nauchno-prakticheskaya revmatologiya — Scientific and Practical Rheumatology. 2002; 1: 40–47.Kuzmina N. N., Nikishina I. P., Shaykov A. V. et al. Rossyskiy adaptirovanniy variant oprosnikov dlya otsenki kachestva zhizni i sostoyaniya zdorovya detey s yuvenilnymi khronicheskimi artritami [Russian adapted version of questionnaire for the assessment of life quality and health status of children with juvenile chronic arthritis]. Nauchno-prakticheskaya revmatologiya — Scientific and Practical Rheumatology. 2002; 1: 40–47.Malievskiy V. A. Rasprostranennost i struktura yuvenilnykh idiopaticheskikh artritov sredi detey v Respublike Bashkortostan [Prevalence and structure of juvenile idiopathic arthritis in children in the Republic of Bashkortostan]. Nauchno-prakticheskaya revmatologiya — Scientific and Practical Rheumatology. 2006; 1: 56–60.Malievskiy V. A. Rasprostranennost i struktura yuvenilnykh idiopaticheskikh artritov sredi detey v Respublike Bashkortostan [Prevalence and structure of juvenile idiopathic arthritis in children in the Republic of Bashkortostan]. Nauchno-prakticheskaya revmatologiya — Scientific and Practical Rheumatology. 2006; 1: 56–60.Malievskiy V. A. Kachestvo zhizni detey s yuvenilnym idiopaticheskim artritom [The quality of life of children with juvenile idiopathic arthritis]. Voprosy sovremennoy pediatrii — Current Pediatrics. 2006; 5 (2; Annex): 5–11.Malievskiy V. A. Kachestvo zhizni detey s yuvenilnym idiopaticheskim artritom [The quality of life of children with juvenile idiopathic arthritis]. Voprosy sovremennoy pediatrii — Current Pediatrics. 2006; 5 (2; Annex): 5–11.Malievskiy V. A. Registr kak sposob optimizatsii spetsializirovannoy meditsinskoy pomoshchi [Register as a way to optimize the specialized medical care]. Problemy upravleniya zdravookhraneniyem — Problems of health management. 2005; 6: 59–63.Malievskiy V. A. Registr kak sposob optimizatsii spetsializirovannoy meditsinskoy pomoshchi [Register as a way to optimize the specialized medical care]. Problemy upravleniya zdravookhraneniyem — Problems of health management. 2005; 6: 59–63.Malievskiy V. A. Territorialny registr bolnykh yuvenilnymi artritami [Regional register of patients with juvenile arthritis]. Nauchno-prakticheskaya revmatologiya — Scientific and Practical Rheumatology. 2005; 4: 95–97.Malievskiy V. A. Territorialny registr bolnykh yuvenilnymi artritami [Regional register of patients with juvenile arthritis]. Nauchno-prakticheskaya revmatologiya — Scientific and Practical Rheumatology. 2005; 4: 95–97.Resolution of the Government of the Republic of Bashkortostan No. 540 from 30.12.2011 “On the provision of social support to certain groups in providing medicines and medical devices for the provision of ambulatory and polyclinic care.”Resolution of the Government of the Republic of Bashkortostan No. 540 from 30.12.2011 “On the provision of social support to certain groups in providing medicines and medical devices for the provision of ambulatory and polyclinic care.”Resolution of the Government of the Republic of Bashkortostan No. 471 from 21.12.2012 “On amendments to the list of medications and medical devices in the provision of ambulatory polyclinic care.”Resolution of the Government of the Republic of Bashkortostan No. 471 from 21.12.2012 “On amendments to the list of medications and medical devices in the provision of ambulatory polyclinic care.”Resolution of the Government of the Republic of Bashkortostan No. 218 from May 28, 2013 “On the provision of social support to certain groups in providing medicines and medical devices for the provision of ambulatory and polyclinic care.”Resolution of the Government of the Republic of Bashkortostan No. 218 from May 28, 2013 “On the provision of social support to certain groups in providing medicines and medical devices for the provision of ambulatory and polyclinic care.”Resolution of the Government of the Republic of Bashkortostan No. 291 from June 28, 2013 “On amendments to the state benefit program for providing free medical care to citizens in the Republic of Bashkortostan in 2013 and the planning period of 2014 and 2015.”Resolution of the Government of the Republic of Bashkortostan No. 291 from June 28, 2013 “On amendments to the state benefit program for providing free medical care to citizens in the Republic of Bashkortostan in 2013 and the planning period of 2014 and 2015.”Resolution of the Government of the Republic of Bashkortostan No. 500 from December 29, 2012 “On amendments to the state benefit program for providing free medical care to citizens in the Republic of Bashkortostan in 2013 and the planning period of 2014 and 2015.”Resolution of the Government of the Republic of Bashkortostan No. 500 from December 29, 2012 “On amendments to the state benefit program for providing free medical care to citizens in the Republic of Bashkortostan in 2013 and the planning period of 2014 and 2015.”Order of the Ministry of Health of the Russian Federation from October 25, 2012 No. 441n “On approval of the provision of medical care to children with rheumatology.”Order of the Ministry of Health of the Russian Federation from October 25, 2012 No. 441n “On approval of the provision of medical care to children with rheumatology.”

The authors declare that there are no conflicts of interest present.