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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">helmholtzeyeinstitute</journal-id><journal-title-group><journal-title xml:lang="ru">Российский офтальмологический журнал</journal-title><trans-title-group xml:lang="en"><trans-title>Russian Ophthalmological Journal</trans-title></trans-title-group></journal-title-group><issn pub-type="ppub">2072-0076</issn><issn pub-type="epub">2587-5760</issn><publisher><publisher-name>Real time Publishers</publisher-name></publisher></journal-meta><article-meta><article-id pub-id-type="doi">10.21516/2072-0076-2023-16-1-51-58</article-id><article-id custom-type="elpub" pub-id-type="custom">helmholtzeyeinstitute-1168</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>КЛИНИЧЕСКИЕ ИССЛЕДОВАНИЯ</subject></subj-group><subj-group subj-group-type="section-heading" xml:lang="en"><subject>CLINICAL STUDIES</subject></subj-group></article-categories><title-group><article-title>Семантический анализ сообщений в социальных сетях пациентов с неоваскулярной возрастной макулярной дегенерацией и диабетическим макулярным отеком по открытым источникам в интернете — исследование мнения пациентов в условиях реальной клинической практики</article-title><trans-title-group xml:lang="en"><trans-title>Semantic analysis of social media messages of patients with neovascular age-related macular degeneration and diabetic macular edema by open Internet sources — a study of patients' opinions in real clinical practice</trans-title></trans-title-group></title-group><contrib-group><contrib contrib-type="author" corresp="yes"><name-alternatives><name name-style="eastern" xml:lang="ru"><surname>Нероев</surname><given-names>В. В.</given-names></name><name name-style="western" xml:lang="en"><surname>Neroev</surname><given-names>V. V.</given-names></name></name-alternatives><bio xml:lang="ru"><p>Владимир Владимирович Нероев — академик РАН, д-р мед. наук, профессор, директор, руководитель отдела патологии сетчатки и зрительного нерва</p><p>ул. Садовая-Черногрязская, д. 14/19, Москва, 105062</p></bio><bio xml:lang="en"><p>Vladimir V. Neroev — Academician of the RAS, Dr. of Med. Sci., professor, director, head of retina and optic nerve pathology department</p><p>14/19, Sadovaya-Chernogryazskaya St., Moscow, 105062</p></bio><xref ref-type="aff" rid="aff-1"/></contrib><contrib contrib-type="author" corresp="yes"><name-alternatives><name name-style="eastern" xml:lang="ru"><surname>Зайцева</surname><given-names>О. В.</given-names></name><name name-style="western" xml:lang="en"><surname>Zaytseva</surname><given-names>O. V.</given-names></name></name-alternatives><bio xml:lang="ru"><p>Ольга Владимировна Зайцева — канд. мед. наук, заместитель директора, ведущий научный сотрудник отдела патологии сетчатки и зрительного нерва</p><p>ул. Садовая-Черногрязская, д. 14/19, Москва, 105062</p></bio><bio xml:lang="en"><p>Olga V. Zaytseva — Cand. оf Med. Sci., deputy director, leading researcher of the department of retina and optic nerve pathology</p><p>14/19, Sadovaya-Chernogryazskaya St., Moscow, 105062</p></bio><email xlink:type="simple">sea-zov@yandex.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>Бердиева</surname><given-names>А. Ю.</given-names></name><name name-style="western" xml:lang="en"><surname>Berdieva</surname><given-names>A. Yu.</given-names></name></name-alternatives><bio xml:lang="ru"><p>Анна Юрьевна Бердиева — медицинский советник</p><p>Ленинградский проспект, д. 70, Москва, 125315</p></bio><bio xml:lang="en"><p>Anna Y. Berdieva — federal medical advisor</p><p>70, Leningradskiy Avenue, Moscow, 125315</p></bio><xref ref-type="aff" rid="aff-2"/></contrib><contrib contrib-type="author" corresp="yes"><name-alternatives><name name-style="eastern" xml:lang="ru"><surname>Габдуллина</surname><given-names>З. М.</given-names></name><name name-style="western" xml:lang="en"><surname>Gabdullina</surname><given-names>Z. M.</given-names></name></name-alternatives><bio xml:lang="ru"><p>Земфира Мансуровна Габдуллина — медицинский советник</p><p>Ленинградский проспект, д. 70, Москва, 125315</p></bio><bio xml:lang="en"><p>Zemfira M. Gabdullina — federal medical advisor</p><p>70, Leningradskiy Avenue, Moscow, 125315</p></bio><xref ref-type="aff" rid="aff-2"/></contrib><contrib contrib-type="author" corresp="yes"><name-alternatives><name name-style="eastern" xml:lang="ru"><surname>Пудиков</surname><given-names>М. Н.</given-names></name><name name-style="western" xml:lang="en"><surname>Pudikov</surname><given-names>M. N.</given-names></name></name-alternatives><bio xml:lang="ru"><p>Михаил Николаевич Пудиков — руководитель терапевтического направления «ретина»</p><p>Ленинградский проспект, д. 70, Москва, 125315</p></bio><bio xml:lang="en"><p>Mikhail N. Pudikov — therapeutic area head Retina</p><p>70, Leningradskiy Avenue, Moscow, 125315</p></bio><xref ref-type="aff" rid="aff-2"/></contrib><contrib contrib-type="author" corresp="yes"><name-alternatives><name name-style="eastern" xml:lang="ru"><surname>Леонова</surname><given-names>А. А.</given-names></name><name name-style="western" xml:lang="en"><surname>Leonova</surname><given-names>A. A.</given-names></name></name-alternatives><bio xml:lang="ru"><p>Анна Андреевна Леонова — компьютерный лингвист</p><p>ул. Ильинка, д. 4, Москва, 109012</p></bio><bio xml:lang="en"><p>Anna A. Leonova — computational linguist</p><p>4, Ilyinka str., Moscow, 109012</p></bio><xref ref-type="aff" rid="aff-3"/></contrib><contrib contrib-type="author" corresp="yes"><name-alternatives><name name-style="eastern" xml:lang="ru"><surname>Хорошевский</surname><given-names>В. Ф.</given-names></name><name name-style="western" xml:lang="en"><surname>Khoroshevsky</surname><given-names>V. F.</given-names></name></name-alternatives><bio xml:lang="ru"><p>Владимир Федорович Хорошевский — д-р тех. наук, ведущий научный сотрудник</p><p>ул. Ильинка, д. 4, Москва, 109012;  ул. Вавилова, д. 40, Москва, 119333</p></bio><bio xml:lang="en"><p>Vladimir F. Khoroshevsky — Dr. of Tech. Sci., leading researcher</p><p>4, Ilyinka str., Moscow, 109012; 40, Vavilov str., Moscow, 119333</p></bio><xref ref-type="aff" rid="aff-4"/></contrib></contrib-group><aff-alternatives id="aff-1"><aff xml:lang="ru"><institution>ФГБУ «НМИЦ глазных болезней им. Гельмгольца» Минздрава России</institution><country>Россия</country></aff><aff xml:lang="en"><institution>Helmholtz National Medical Research Center of Eye Diseases</institution><country>Russian Federation</country></aff></aff-alternatives><aff-alternatives id="aff-2"><aff xml:lang="ru"><institution>ООО «Новартис Фарма»</institution><country>Россия</country></aff><aff xml:lang="en"><institution>Novartis Pharma LLC</institution><country>Russian Federation</country></aff></aff-alternatives><aff-alternatives id="aff-3"><aff xml:lang="ru"><institution>ООО «Семантик Хаб»</institution><country>Россия</country></aff><aff xml:lang="en"><institution>Semantic Hub</institution><country>Russian Federation</country></aff></aff-alternatives><aff-alternatives id="aff-4"><aff xml:lang="ru"><institution>ООО «Семантик Хаб»;  Вычислительный центр им. А.А. Дородницына РАН</institution><country>Россия</country></aff><aff xml:lang="en"><institution>Semantic Hub; Dorodnicyn Computing Centre of RAS</institution><country>Russian Federation</country></aff></aff-alternatives><pub-date pub-type="collection"><year>2023</year></pub-date><pub-date pub-type="epub"><day>15</day><month>03</month><year>2023</year></pub-date><volume>16</volume><issue>1</issue><fpage>51</fpage><lpage>58</lpage><permissions><copyright-statement>Copyright &amp;#x00A9; Нероев В.В., Зайцева О.В., Бердиева А.Ю., Габдуллина З.М., Пудиков М.Н., Леонова А.А., Хорошевский В.Ф., 2023</copyright-statement><copyright-year>2023</copyright-year><copyright-holder xml:lang="ru">Нероев В.В., Зайцева О.В., Бердиева А.Ю., Габдуллина З.М., Пудиков М.Н., Леонова А.А., Хорошевский В.Ф.</copyright-holder><copyright-holder xml:lang="en">Neroev V.V., Zaytseva O.V., Berdieva A.Y., Gabdullina Z.M., Pudikov M.N., Leonova A.A., Khoroshevsky V.F.</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://roj.igb.ru/jour/article/view/1168">https://roj.igb.ru/jour/article/view/1168</self-uri><abstract><p>Цель работы — проанализировать сообщения в социальных сетях пациентов с нео васкулярной возрастной макулярной дегенерацией (нВ МД) и диабетической ретинопатией (ДР) или лиц, ухаживающих за ними, для исследования мнения таких пациентов в условиях реальной клинической практики. Материал и методы. Обезличенные истории пациентов из русскоязычных открытых интернет-ресурсов (форумов, социальных сетей РФ) обрабатывались методами искусственного интеллекта: технологиями автоматизированного анализа неструктурированных текстов на естественном языке, в том числе семантического анализа. В этих сообщениях пациенты и лица, осуществляющие уход за ними (в первую очередь родственники), открыто и «без цензуры» делятся своим опытом в диагностике и лечении, ищут второе мнение или поддерживают друг друга. Они используют как социальные сети общего назначения, так и форумы, посвященные конкретным заболеваниям, и порталы вопросов и ответов. Выявлено 73 098 постов, связанных с ДР/нВМД, в том числе 13 138 постов от 844 пациентов с ДР и 358 постов от 212 пациентов с нВМД. Сообщения проанализированы в несколько этапов с помощью технологий автоматизированного анализа неструктурированных текстов на естественном языке, в том числе семантических технологий, ориентированных на обработку больших объемов информации. Семантический анализ текста осуществлялся по смыслу, а не по ключевым словам. Результаты. Получена информация не только о характеристиках пациентов и схемах лечения заболеваний сетчатки в реальной практике, но также и об отношении пациентов к заболеванию, диагностическим и лечебным процедурам, их потребностях и препятствиях на пути к лечению. Выявлены низкие уровни активности в интернет-пространстве и осведомленности больных с нВМД и ДР по сравнению с пациентами c менее распространенными неофтальмологическими заболеваниями (рак молочной железы, рассеянный склероз и др.) и другими офтальмологическими заболеваниями. Большая часть сообщений по ДР написана родственниками (82,6 % сообщений), по нВМД — самими пациентами (65 %). Ключевым пунктом для пациентов с ДР были диабетические микрососудистые проявления (более 42 тыс. постов касались обсуждения диабетической стопы и только 681 — ДР). Показано, что качество жизни сильно зависит от сопутствующих заболеваний, связанных с диабетом (20 % пациентов с ДР), и неспособности работать, являющейся основным бременем для 30 % пациентов с нВМД. Время, прошедшее от момента появления жалоб до установления диагноза, при нВМД составляло в среднем год (в 35 % сообщений — 1–2 мес), при ДР — 1–2 года (более 50 % сообщений). Основными целями посещения клиник были обследования (оптическую когерентную томографию упоминают 59 % пациентов с ВМД) и лечение (24,1 %). Только 33,2 % пациентов с нВМД и 7 % пациентов с ДР отмечают, что они получали анти-VEGF препараты. Недоступность анти-VEGF терапии названа в числе ключевых проблем лечения. Пациенты продемонстрировали отсутствие четкого понимания прогноза и эффективных вариантов лечения. Заключение. Выявлена низкая активность и осведомленность у пациентов с нВМД и ДР по отношению к своему заболеванию. Это обосновывает необходимость повышения компьютерной грамотности и осведомленности об эффективных терапевтических вариантах и критериях эффективности лечения не только для пациентов, но и для их более молодых родственников. Подтверждено снижение качества жизни пациентов, обусловленное заболеваниями сетчатки. Необходимо изменить по крайней мере несколько аспектов ведения пациентов с нВМД и ДР: ускорение постановки диагноза, назначение эффективных методов лечения и повышение их доступности.</p></abstract><trans-abstract xml:lang="en"><p>Purpose: to analyze social media messages of patients with neovascular age-related macular degeneration (nAMD) and diabetic retinopathy (DR), or their careers in order to investigates the patients’ opinion in the condition of real clinical routine. Material and methods. Real-life anonymized stories of patients from Russian-language open Internet sources (forums, social networks in Russia) were processed by artificial intelligence techniques: the technologies of automated analysis of unstructured natural language texts, including semantic technologies. In these messages, patients and their careers (mainly, family members) openly and in an ‘uncensored’ way share their experience in diagnostics and treatment while looking for a second opinion or supporting each other. They use general social networks as well as specific disease-related forums or Q&amp;A portals. We identified 73 098 DR/nAMD-related posts, including 13 138 posts by 844 DR patients and 358 posts by 212 nAMD patients. The posts were analyzed in several steps with the technologies of automated analysis of unstructured natural language texts including semantic technologies aimed at processing large volumes of data. The semantic analysis of texts dealt with the whole meaning rather than individual keywords. Results. We obtained information on the patients’ characteristics and treatment plans of retinal diseases in real practice but also on the patients’ attitude to their condition, diagnostic and curative procedures, their needs and difficulties experienced during treatment. The nAMD and DR patients have a low level of Internet activity and poor awareness of these diseases as compared with the patients suffering from non-ophthalmological diseases with lower prevalence (breast cancer, multiple sclerosis, etc.) or other ophthalmological disorders. Most of the content for DR was produced by the patients’ relatives (82.6 % of messages), and for nAMD — by the patients themselves (65 %). The key item for DR patients was diabetic microvascular manifestations (over 42 000 posts discussed ‘diabetic foot’ and only 681 ‘diabetic retinopathy’). Quality of life (QoL) was shown to be significantly affected with inability to work as a major burden for 30 % of nAMD patients, and diabetes-associated comorbidities as a key factor compromising QoL in 20 % of DR patients. In nAMD patients, the average time-to-diagnosis after disease manifestation was 1 year (35 % patients reported 1–2 months), in DR, over a half of the messages mentioned 1–2 years. The key reasons for visiting the clinics included in-depth eye exams (OCT mentioned by 59 % of nAMD patients) and treatment (24.1 %). Only 33.2 % of nAMD patients and 7 % of DR patients noted that they received anti-VEGFs. Treatment unaffordability is one of the key barriers. The patients lack clear understanding of the prognosis and effective treatment options. Conclusion. The study revealed low activity and awareness of nAMD and DR patients with regard to their diseases. This justifies the need of increasing computer literacy and awareness of effective treatment options and efficacy criteria not only in patients, but also in their younger relatives. The results confirm that, among the studied group of retinal patients, vision-related quality of life is compromised. We need to change at least several aspects of nAMD and DR patients’ management: reducing the time to diagnosis, prescribing effective treatment options and increasing the availability of these options.</p></trans-abstract><kwd-group xml:lang="ru"><kwd>возрастная макулярная дегенерация</kwd><kwd>диабетическая ретинопатия</kwd><kwd>бремя заболевания</kwd></kwd-group><kwd-group xml:lang="en"><kwd>age-related macular degeneration</kwd><kwd>diabetic retinopathy</kwd><kwd>disease burden</kwd></kwd-group></article-meta></front><back><ref-list><title>References</title><ref id="cit1"><label>1</label><citation-alternatives><mixed-citation xml:lang="ru">Нероев В.В. 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