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<article article-type="research-article" dtd-version="1.3" xmlns:mml="http://www.w3.org/1998/Math/MathML" xmlns:xlink="http://www.w3.org/1999/xlink" xmlns:xsi="http://www.w3.org/2001/XMLSchema-instance" xml:lang="ru"><front><journal-meta><journal-id journal-id-type="publisher-id">rsp</journal-id><journal-title-group><journal-title xml:lang="ru">Научно-практическая ревматология</journal-title><trans-title-group xml:lang="en"><trans-title>Rheumatology Science and Practice</trans-title></trans-title-group></journal-title-group><issn pub-type="ppub">1995-4484</issn><issn pub-type="epub">1995-4492</issn><publisher><publisher-name>IMA-PRESS, LLC</publisher-name></publisher></journal-meta><article-meta><article-id pub-id-type="doi">10.47360/1995-4484-2022-602-611</article-id><article-id custom-type="elpub" pub-id-type="custom">rsp-3251</article-id><article-categories><subj-group subj-group-type="heading"><subject>Research Article</subject></subj-group><subj-group subj-group-type="section-heading" xml:lang="ru"><subject>ОРИГИНАЛЬНЫЕ ИССЛЕДОВАНИЯ</subject></subj-group><subj-group subj-group-type="section-heading" xml:lang="en"><subject>ORIGINAL RESEARCH</subject></subj-group></article-categories><title-group><article-title>Особенности клинических проявлений, течения, исходов и качества жизни, связанного со здоровьем, у пациентов с системной красной волчанкой в Республике Казахстан</article-title><trans-title-group xml:lang="en"><trans-title>Features of clinical manifestations, course, outcomes and health related quality of life in patients with systemic lupus erythematosus in the Republic of Kazakhstan</trans-title></trans-title-group></title-group><contrib-group><contrib contrib-type="author" corresp="yes"><contrib-id contrib-id-type="orcid">https://orcid.org/0000-0002-4630-3985</contrib-id><name-alternatives><name name-style="eastern" xml:lang="ru"><surname>Исаева</surname><given-names>Б. Г.</given-names></name><name name-style="western" xml:lang="en"><surname>Issayeva</surname><given-names>B. G.</given-names></name></name-alternatives><bio xml:lang="ru"><p>Исаева Бакытшолпан Габдулхакимовна</p><p>005012, Алматы, ул. Толе би, 94</p></bio><bio xml:lang="en"><p>005012, Almaty, Töle Bi str., 94</p></bio><email xlink:type="simple">sholpan_issa@mail.ru</email><xref ref-type="aff" rid="aff-1"/></contrib><contrib contrib-type="author" corresp="yes"><name-alternatives><name name-style="eastern" xml:lang="ru"><surname>Асеева</surname><given-names>Е. А.</given-names></name><name name-style="western" xml:lang="en"><surname>Aseeva</surname><given-names>E. A.</given-names></name></name-alternatives><bio xml:lang="ru"><p>Асеева Елена Александровна</p><p>115522, Москва, Каширское шоссе, 34а</p></bio><bio xml:lang="en"><p>115522, Moscow, Kashirskoye Highway, 34A</p></bio><email xlink:type="simple">eaasseeva@mail.ru</email><xref ref-type="aff" rid="aff-2"/></contrib><contrib contrib-type="author" corresp="yes"><contrib-id contrib-id-type="orcid">https://orcid.org/0000-0002-6105-7559</contrib-id><name-alternatives><name name-style="eastern" xml:lang="ru"><surname>Сапарбаева</surname><given-names>М. М.</given-names></name><name name-style="western" xml:lang="en"><surname>Saparbayeva</surname><given-names>M. M.</given-names></name></name-alternatives><bio xml:lang="ru"><p>005012, Алматы, ул. Толе би, 94</p></bio><bio xml:lang="en"><p>005012, Almaty, Töle Bi str., 94</p></bio><xref ref-type="aff" rid="aff-1"/></contrib><contrib contrib-type="author" corresp="yes"><contrib-id contrib-id-type="orcid">https://orcid.org/0000-0002-0020-8464</contrib-id><name-alternatives><name name-style="eastern" xml:lang="ru"><surname>Исаева</surname><given-names>С. М.</given-names></name><name name-style="western" xml:lang="en"><surname>Issayeva</surname><given-names>S. M.</given-names></name></name-alternatives><bio xml:lang="ru"><p>005012, Алматы, ул. Толе би, 94</p></bio><bio xml:lang="en"><p>005012, Almaty, Töle Bi str., 94</p></bio><xref ref-type="aff" rid="aff-1"/></contrib><contrib contrib-type="author" corresp="yes"><contrib-id contrib-id-type="orcid">https://orcid.org/0000-0002-7191-7866</contrib-id><name-alternatives><name name-style="eastern" xml:lang="ru"><surname>Кулшыманова</surname><given-names>М. М.</given-names></name><name name-style="western" xml:lang="en"><surname>Kulshymanova</surname><given-names>M. M.</given-names></name></name-alternatives><bio xml:lang="ru"><p>005012, Алматы, ул. Толе би, 94</p></bio><bio xml:lang="en"><p>005012, Almaty, Töle Bi str., 94</p></bio><xref ref-type="aff" rid="aff-1"/></contrib><contrib contrib-type="author" corresp="yes"><contrib-id contrib-id-type="orcid">https://orcid.org/0000-0002-4400-2636</contrib-id><name-alternatives><name name-style="eastern" xml:lang="ru"><surname>Кайыргали</surname><given-names>Ш. М.</given-names></name><name name-style="western" xml:lang="en"><surname>Kaiyrgali</surname><given-names>S. M.</given-names></name></name-alternatives><bio xml:lang="ru"><p>055556, Алматы, ул. Айтеке би, 116</p></bio><bio xml:lang="en"><p>055556, Almaty, Ayteke Bi str., 116</p></bio><xref ref-type="aff" rid="aff-3"/></contrib><contrib contrib-type="author" corresp="yes"><contrib-id contrib-id-type="orcid">https://orcid.org/0000-0002-7539-9736</contrib-id><name-alternatives><name name-style="eastern" xml:lang="ru"><surname>Аманжолова</surname><given-names>А. С.</given-names></name><name name-style="western" xml:lang="en"><surname>Amanzholov</surname><given-names>A. S.</given-names></name></name-alternatives><bio xml:lang="ru"><p>005012, Алматы, ул. Толе би, 94</p></bio><bio xml:lang="en"><p>005012, Almaty, Töle Bi str., 94</p></bio><xref ref-type="aff" rid="aff-1"/></contrib><contrib contrib-type="author" corresp="yes"><contrib-id contrib-id-type="orcid">https://orcid.org/0000-0002-5526-3727</contrib-id><name-alternatives><name name-style="eastern" xml:lang="ru"><surname>Бижанова</surname><given-names>М. П.</given-names></name><name name-style="western" xml:lang="en"><surname>Bizhanova</surname><given-names>M. P.</given-names></name></name-alternatives><bio xml:lang="ru"><p>005012, Алматы, ул. Толе би, 94</p></bio><bio xml:lang="en"><p>005012, Almaty, Töle Bi str., 94</p></bio><xref ref-type="aff" rid="aff-1"/></contrib><contrib contrib-type="author" corresp="yes"><contrib-id contrib-id-type="orcid">https://orcid.org/0000-0002-3331-153X</contrib-id><name-alternatives><name name-style="eastern" xml:lang="ru"><surname>Калыкова</surname><given-names>М. Б.</given-names></name><name name-style="western" xml:lang="en"><surname>Kalykova</surname><given-names>M. B.</given-names></name></name-alternatives><bio xml:lang="ru"><p>055556, Алматы, ул. Айтеке би, 116</p></bio><bio xml:lang="en"><p>055556, Almaty, Ayteke Bi str., 116</p></bio><xref ref-type="aff" rid="aff-3"/></contrib><contrib contrib-type="author" corresp="yes"><contrib-id contrib-id-type="orcid">https://orcid.org/0000-0002-5206-1732</contrib-id><name-alternatives><name name-style="eastern" xml:lang="ru"><surname>Соловьев</surname><given-names>С. К.</given-names></name><name name-style="western" xml:lang="en"><surname>Solovyev</surname><given-names>S. K.</given-names></name></name-alternatives><bio xml:lang="ru"><p>115522, Москва, Каширское шоссе, 34а</p></bio><bio xml:lang="en"><p>115522, Moscow, Kashirskoye Highway, 34A</p></bio><xref ref-type="aff" rid="aff-2"/></contrib><contrib contrib-type="author" corresp="yes"><contrib-id contrib-id-type="orcid">https://orcid.org/0000-0002-0835-9814</contrib-id><name-alternatives><name name-style="eastern" xml:lang="ru"><surname>Ахтаева</surname><given-names>Н. C.</given-names></name><name name-style="western" xml:lang="en"><surname>Akhtaeva</surname><given-names>N. S.</given-names></name></name-alternatives><bio xml:lang="ru"><p>005012, Алматы, ул. Толе би, 94</p></bio><bio xml:lang="en"><p>005012, Almaty, Töle Bi str., 94</p></bio><xref ref-type="aff" rid="aff-1"/></contrib></contrib-group><aff-alternatives id="aff-1"><aff xml:lang="ru"><institution>НАО «Казахский национальный медицинский университет имени С.Д. Асфендиярова»</institution><country>Казахстан</country></aff><aff xml:lang="en"><institution>Asfendiyarov Kazakh National Medical University</institution><country>Kazakhstan</country></aff></aff-alternatives><aff-alternatives id="aff-2"><aff xml:lang="ru"><institution>ФГБНУ «Научно-исследовательский институт ревматологии им. В.А. Насоновой»</institution><country>Россия</country></aff><aff xml:lang="en"><institution>V.A. Nasonova Research Institute of Rheumatology</institution><country>Russian Federation</country></aff></aff-alternatives><aff-alternatives id="aff-3"><aff xml:lang="ru"><institution>ГКП на ПХВ «Городской ревматологический центр» Управления здравоохранения города Алматы</institution><country>Казахстан</country></aff><aff xml:lang="en"><institution>City Rheumatological Center</institution><country>Kazakhstan</country></aff></aff-alternatives><pub-date pub-type="collection"><year>2022</year></pub-date><pub-date pub-type="epub"><day>26</day><month>12</month><year>2022</year></pub-date><volume>60</volume><issue>6</issue><elocation-id>602–611</elocation-id><permissions><copyright-statement>Copyright &amp;#x00A9; Исаева Б.Г., Асеева Е.А., Сапарбаева М.М., Исаева С.М., Кулшыманова М.М., Кайыргали Ш.М., Аманжолова А.С., Бижанова М.П., Калыкова М.Б., Соловьев С.К., Ахтаева Н.C., 2022</copyright-statement><copyright-year>2022</copyright-year><copyright-holder xml:lang="ru">Исаева Б.Г., Асеева Е.А., Сапарбаева М.М., Исаева С.М., Кулшыманова М.М., Кайыргали Ш.М., Аманжолова А.С., Бижанова М.П., Калыкова М.Б., Соловьев С.К., Ахтаева Н.C.</copyright-holder><copyright-holder xml:lang="en">Issayeva B.G., Aseeva E.A., Saparbayeva M.M., Issayeva S.M., Kulshymanova M.M., Kaiyrgali S.M., Amanzholov A.S., Bizhanova M.P., Kalykova M.B., Solovyev S.K., Akhtaeva N.S.</copyright-holder><license xml:lang="ru" license-type="creative-commons-attribution" xlink:href="https://creativecommons.org/licenses/by/4.0/" xlink:type="simple"><license-p>Данная работа распространяется под лицензией Creative Commons Attribution 4.0.</license-p></license><license xml:lang="en" license-type="creative-commons-attribution" xlink:href="https://creativecommons.org/licenses/by/4.0/" xlink:type="simple"><license-p>This work is licensed under a Creative Commons Attribution 4.0 License.</license-p></license></permissions><self-uri xlink:href="https://rsp.mediar-press.net/rsp/article/view/3251">https://rsp.mediar-press.net/rsp/article/view/3251</self-uri><abstract><p>Цель исследования – оценить особенности клинических проявлений, течения, исходов и качества жизни, связанного со здоровьем (КЖСЗ), у пациентов с системной красной волчанкой (СКВ) в Республике Казахстан.Материал и методы. В исследование включено 102 пациента с достоверной СКВ по критериям SLICC (Systemic Lupus International Collaborating Clinics; 2012). Активность болезни оценивалась по индексу SLEDAI-2K (Systemic Lupus Erythematosus Disease Activity 2000); необратимые повреждения органов – по индексу повреждения (ИП) SLICC/ACR (Американская коллегия ревматологов, American College of Rheumatology; 2000). Статистическая обработка проводилась при помощи программного обеспечения IBM SPSS 13 (IBM Corp., США). Переменные с нормальным распределением представлены в виде М±SD, с ненормальным – в виде медианы (Me), 25-го и 75-го перцентилей.Результаты и обсуждение. Среди включенных в исследование пациентов преобладали женщины (98%), преимущественно азиатки (83,33%), молодые (средний возраст – 33,85±10,58 года) с медианой длительности заболевания 5 [2; 9] лет, с высокой (30,8%) и очень высокой (39,2%) активностью (среднее значение SLEDAI-2K – 17,64±8,80 балла). Дебют болезни в подростковом возрасте имели 18,6% пациентов. Отмечались следующие клинические проявления болезни: поражение кожи (острое активное или хроническое) – в 98% случаев, поражение суставов – в 79,4%, нерубцовая алопеция – в 75,5%, нейропсихические нарушения – в 49%, поражение слизистых оболочек – в 46,1%, гематологические проявления – в 54,9%, иммунологические нарушения – в 100%. ИП был низким у 20,6%, средним – у 59,8%, высоким – у 9,8% пациентов; повреждения отсутствовали в 9,8% случаев. У 93,1% пациентов выявлены факторы риска неблагоприятного исхода (ФРНИ). Оценка КЖСЗ у больных СКВ показала значительное снижение по всем шкалам. Коррекция программы лечения с учетом ФРНИ заключалась в усилении терапии с назначением генноинженерных биологических препаратов (ГИБП).Заключение. СКВ – социально значимое заболевание в Казахстане с высоким приростом заболеваемости – 101% за 10 лет (2009–2018 гг.). Среди больных СКВ преобладают лица молодого возраста и женского пола. Длительность заболевания до верификации диагноза СКВ достигает 5 лет. Поражение органов уже в дебюте заболевания и наличие ФРНИ болезни выявлено у 93,1% пациентов, что свидетельствует о тяжести течения СКВ и требует ранней диагностики, адекватного патогенетического лечения и назначения ГИБП.</p></abstract><trans-abstract xml:lang="en"><p>Objective – to evaluate the features of clinical manifestations, course, outcomes and quality of life related to health in patients with systemic lupus erythematosus in the Republic of Kazakhstan.Patients and methods. The study included 102 patients with systemic lupus erythematosus (SLE) with a reliable diagnosis according to SLICC (2012). Disease activity was assessed by the SLEDAI 2K index, organ damage (IOD) by SLICC/ACR (2000). Statistical processing was carried out using SPSS 13 software (IBM Corp., USA). Variables with a parametric distribution are presented as М±SD, nonparametric – as a median (Me) [25th; 75th percentile].Results and discussion. The cohort was dominated by female patients (98%), Asians (83.33%), young patients (33.85±10.58 years) with a disease duration of 5 [2; 9] years with high (30.8%) and very high (39.2%) degree of activity (SLEDAI-2K – 17.64±8.80 points). The debut of the disease was in 18.6% of patients in adolescence, it was characterized by an unfavorable course. Clinical manifestations of the disease: skin lesions (acute active and chronic forms) (98%), joints (79.4%), non-scarring alopecia (75.5%), neuropsychiatric disorders (49%), mucous membranes (46.1%), hematological (54.9%) and immunological disorders (100%). IOD: low – in 20.6%, medium – in 59.8%, high – in 9.8% of patients, 0 – in 9.8%, Risk factors for poor outcome were in 93.1% of patients. Assessment of health-related quality of life (HRQOL) in SLE patients showed a significant decrease on all scales. Correction of the treatment program, taking into account the factors of adverse outcome (FRNI), consisted in strengthening therapy with the inclusion of genetically engineered biological drugs (GEBP).Conclusion. SLE is a socially significant disease in Kazakhstan with a high incidence rate (101%) over 10 years (2009–2018). The cohort of SLE patients is dominated by young people, females. The duration of the disease is up to 5 years with a delayed verification of the diagnosis of SLE. Organ damage is already in the onset of the disease and the presence of FRNI of the disease in 93.1% of patients, which indicates the severity of the course, which requires early diagnosis and active involvement of pathogenetic treatment, including GEBD. </p></trans-abstract><kwd-group xml:lang="ru"><kwd>системная красная волчанка</kwd><kwd>индекс активности</kwd><kwd>индекс повреждения</kwd><kwd>факторы риска неблагоприятных исходов</kwd><kwd>патогенетическая терапия</kwd></kwd-group><kwd-group xml:lang="en"><kwd>systemic lupus erythematosus</kwd><kwd>activity index</kwd><kwd>damage index</kwd><kwd>risk factors for adverse outcomes</kwd><kwd>pathogenetic therapy</kwd></kwd-group><funding-group><funding-statement xml:lang="ru">Исследование выполняется по грантовому финансированию Министерства образования и науки Республики Казахстан по приоритетному направлению «Наука о жизни и здоровье», проекту АР05134328 «Разработка национального регистра, определение характерного профиля пациента с системной красной волчанкой и внедрение персонализированной терапии» (2018–2020).</funding-statement></funding-group></article-meta></front><back><ref-list><title>References</title><ref id="cit1"><label>1</label><citation-alternatives><mixed-citation xml:lang="ru">Насонов ЕЛ, Соловьев СК, Аршинов АВ. 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Lupus. 2016;25(7):719-726. doi: 10.1177/0961203315627199</mixed-citation></citation-alternatives></ref></ref-list><fn-group><fn fn-type="conflict"><p>The authors declare that there are no conflicts of interest present.</p></fn></fn-group></back></article>
