背景:系统性红斑狼疮(SLE)是一种慢性自身免疫性炎症性疾病,累及各种器官,具有广泛的临床表现。皮肤红斑狼疮(CLE)可以表现为SLE的特征或独立的皮肤疾病。在患有狼疮的个体中,与健康相关的生活质量(HRQoL)经常受到损害。了解患者患病时的观点对于有效满足他们未满足的需求至关重要。社交倾听是一种有前途的新方法,可以提供对患有疾病(狼疮)的患者的经历的见解,并利用这些见解来告知药物开发策略,以满足他们未满足的需求。
目的:本研究的目的是探索SLE和CLE患者的生活体验。包括他们的疾病和治疗经验,HRQoL,和未满足的需求,正如在博客和论坛等基于网络的社交媒体平台中讨论的那样。
方法:从2019年10月至2022年1月,在13个公开的英语社交媒体平台上进行了一项回顾性探索性社会听力研究。采用自然语言处理和知识图谱标注技术对数据进行处理,格式,匿名,并在将它们喂给Pharos之前对它们进行算法注释,Semalytix专有的数据可视化和分析平台,作进一步分析。Pharos用于生成描述性数据统计,提供对个体患者体验变量大小的洞察,它们在变量大小上的差异,和算法标记的变量之间的关联。
结果:这项研究纳入了3834名通过算法确定为狼疮患者的个体中的45,554个帖子。其中,1925(撰写5636个帖子)和106(撰写243个帖子)患者被确定为患有SLE和CLE,分别。患者经常提到与SLE和CLE有关的各种症状,包括疼痛,疲劳,和皮疹;疼痛和疲劳被确定为HRQoL受损的主要驱动因素。HRQoL受影响最大的方面包括“移动性”,“\”认知能力,“”休闲娱乐,“和”睡眠和休息。“现有的药物干预措施对狼疮最繁重的症状管理不善。相反,非药物治疗,比如锻炼和冥想,常与HRQoL改善相关。
结论:狼疮患者报告了症状和HRQoL方面的复杂相互作用,这些相互作用相互影响。这项研究表明,社交倾听是一种有效的方法来收集对患者体验的见解,preferences,和未满足的需求,在药物开发过程中可以考虑开发有效的疗法并改善疾病管理。
BACKGROUND: Systemic lupus erythematosus (SLE) is a chronic autoimmune inflammatory disease affecting various organs with a wide range of clinical manifestations. Cutaneous lupus erythematosus (CLE) can manifest as a feature of SLE or an independent skin ailment. Health-related quality of life (HRQoL) is frequently compromised in individuals living with lupus. Understanding patients\' perspectives when living with a disease is crucial for effectively meeting their unmet needs. Social listening is a promising new method that can provide insights into the experiences of patients living with their disease (lupus) and leverage these insights to inform drug development strategies for addressing their unmet needs.
OBJECTIVE: The objective of this study is to explore the experience of patients living with SLE and CLE, including their disease and treatment experiences, HRQoL, and unmet needs, as discussed in web-based social media platforms such as blogs and forums.
METHODS: A retrospective exploratory social listening study was conducted across 13 publicly available English-language social media platforms from October 2019 to January 2022. Data were processed using natural language processing and knowledge graph tagging technology to clean, format, anonymize, and annotate them algorithmically before feeding them to Pharos, a Semalytix proprietary data visualization and analysis platform, for further analysis. Pharos was used to generate descriptive data statistics, providing insights into the magnitude of individual patient experience variables, their differences in the magnitude of variables, and the associations between algorithmically tagged variables.
RESULTS: A total of 45,554 posts from 3834 individuals who were algorithmically identified as patients with lupus were included in this study. Among them, 1925 (authoring 5636 posts) and 106 (authoring 243 posts) patients were identified as having SLE and CLE, respectively. Patients frequently mentioned various symptoms in relation to SLE and CLE including pain, fatigue, and rashes; pain and fatigue were identified as the main drivers of HRQoL impairment. The most affected aspects of HRQoL included \"mobility,\" \"cognitive capabilities,\" \"recreation and leisure,\" and \"sleep and rest.\" Existing pharmacological interventions poorly managed the most burdensome symptoms of lupus. Conversely, nonpharmacological treatments, such as exercise and meditation, were frequently associated with HRQoL improvement.
CONCLUSIONS: Patients with lupus reported a complex interplay of symptoms and HRQoL aspects that negatively influenced one another. This study demonstrates that social listening is an effective method to gather insights into patients\' experiences, preferences, and unmet needs, which can be considered during the drug development process to develop effective therapies and improve disease management.