开放网络资源对新生血管性年龄相关性黄斑变性和糖尿病性黄斑水肿患者社交媒体信息的语义分析——真实临床实践中患者意见的研究

V. Neroev, O. V. Zaytseva, A. Y. Berdieva, Z. M. Gabdullina, M. N. Pudikov, A. A. Leonova, V. Khoroshevsky
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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&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. 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引用次数: 1

摘要

目的:分析新生血管性年龄相关性黄斑变性(nAMD)和糖尿病视网膜病变(DR)患者的社交媒体信息,或他们的职业生涯,以调查患者在实际临床常规情况下的意见。材料和方法。来自俄语开放互联网来源(俄罗斯的论坛、社交网络)的患者的真实生活匿名故事是通过人工智能技术处理的:非结构化自然语言文本的自动分析技术,包括语义技术。在这些信息中,患者及其职业(主要是家庭成员)以“不受审查”的方式公开分享他们在诊断和治疗方面的经验,同时寻求第二种意见或相互支持。他们使用一般的社交网络以及特定的疾病相关论坛或问答门户网站。我们确定了73098个与DR/nAMD相关的帖子,其中844名DR患者发布了13138个帖子,212名nAMD患者发布了358个帖子。利用非结构化自然语言文本的自动分析技术,包括旨在处理大量数据的语义技术,分几个步骤对这些帖子进行了分析。文本的语义分析处理的是整个意义,而不是单个关键词。后果我们获得了有关患者在实际实践中视网膜疾病的特征和治疗计划的信息,还获得了关于患者对病情的态度、诊断和治疗程序、他们的需求和在治疗过程中遇到的困难的信息。与患有患病率较低的非眼科疾病(乳腺癌症、多发性硬化症等)或其他眼科疾病的患者相比,nAMD和DR患者的互联网活动水平较低,对这些疾病的认识较差。DR的大部分内容由患者亲属产生(82.6%的信息),nAMD的大部分内容则由患者自己产生(65%)。DR患者的关键项目是糖尿病微血管表现(超过42000个帖子讨论了“糖尿病足”,只有681个帖子讨论“糖尿病视网膜病变”)。生活质量(QoL)受到显著影响,30%的nAMD患者的主要负担是无法工作,20%的DR患者的糖尿病相关合并症是影响生活质量的关键因素。在nAMD患者中,疾病表现后的平均诊断时间为1年(35%的患者报告了1-2个月),在DR中,超过一半的信息提到了1-2年。就诊的主要原因包括深入的眼部检查(59%的nAMD患者提到OCT)和治疗(24.1%)。只有33.2%的nAMD患者和7%的DR患者注意到他们接受了抗VEGF。负担不起治疗费用是主要障碍之一。患者对预后缺乏明确的认识,缺乏有效的治疗方案。结论该研究显示,nAMD和DR患者对其疾病的活动性和意识较低。这证明了不仅在患者中,而且在他们的年轻亲属中,需要提高计算机知识和对有效治疗方案和疗效标准的认识。研究结果证实,在研究的视网膜患者中,与视力相关的生活质量受到了影响。我们需要改变nAMD和DR患者管理的至少几个方面:减少诊断时间,制定有效的治疗方案,并增加这些方案的可用性。
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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
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&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.
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CiteScore
0.50
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0.00%
发文量
107
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16 weeks
期刊最新文献
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