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中国成年斑秃患者对 Janus 激酶抑制剂治疗的看法:基于社交媒体平台的定性分析

Perspectives of Chinese Adult Patients with Alopecia Areata on Janus Kinase Inhibitors Therapy: A Qualitative Analysis Based on Social Media Platforms.

作者信息

Song Haizhen, Xiao Yuanyuan, Wang Dong

机构信息

Department of Dermatology, Deyang People's Hospital, Deyang, Sichuan, People's Republic of China.

出版信息

Patient Prefer Adherence. 2025 Jun 3;19:1653-1660. doi: 10.2147/PPA.S510171. eCollection 2025.

Abstract

BACKGROUND

Alopecia areata (AA) is a common autoimmune disorder causing non-scarring hair loss. Janus kinase (JAK) inhibitors have emerged as a promising new treatment approach for AA. This study aimed to investigate the perspectives of Chinese adult AA patients on JAK inhibitor therapy through a qualitative analysis of social media discussions.

METHODS

Keyword searches were conducted on two major Chinese social media platforms, Bidu and Sina Weibo, to retrieve AA-related discussion posts within China. A total of 300 posts met the inclusion criteria and were analyzed using natural language processing techniques. All data used in this study were publicly available, anonymized, and obtained without interaction with human subjects, ensuring compliance with ethical standards. High-frequency terms were categorized into four main themes: drug information, efficacy and side effects, shared experiences, and treatment choices.

RESULTS

Tofacitinib and baricitinib were the most frequently mentioned JAK inhibitors. Patients' discussions focused on treatment efficacy, relapse after discontinuation, and side effects. Specific attention was given to treatment effects at different time points. The psychological burden and emotional impact of AA emerged as significant themes in patients' shared experiences. Patients' discussions on treatment choices and brand selection reflected their active involvement in decision-making and desire for personalized treatment options.

CONCLUSION

This study reveals the significant interest and hope that Chinese adult AA patients have in JAK inhibitor therapy. The findings underscore the importance of comprehensive patient education, individualized risk assessment, and shared decision-making in the management of AA. Understanding patients' perspectives is crucial for developing patient-centered care strategies and improving treatment outcomes. Previous studies have demonstrated the feasibility and value of using social media data to explore patient perceptions and health behaviors in various diseases.

摘要

背景

斑秃(AA)是一种常见的自身免疫性疾病,可导致非瘢痕性脱发。Janus激酶(JAK)抑制剂已成为一种有前景的斑秃新治疗方法。本研究旨在通过对社交媒体讨论的定性分析,调查中国成年斑秃患者对JAK抑制剂治疗的看法。

方法

在两个主要的中国社交媒体平台百度和新浪微博上进行关键词搜索,以检索中国境内与斑秃相关的讨论帖子。共有300个帖子符合纳入标准,并使用自然语言处理技术进行分析。本研究中使用的所有数据均为公开可用、匿名且在不与人类受试者互动的情况下获得,确保符合伦理标准。高频词汇被归类为四个主要主题:药物信息、疗效和副作用、分享的经验以及治疗选择。

结果

托法替布和巴瑞替尼是最常被提及的JAK抑制剂。患者的讨论集中在治疗效果、停药后的复发以及副作用。特别关注了不同时间点的治疗效果。斑秃的心理负担和情感影响在患者分享的经验中成为重要主题。患者对治疗选择和品牌选择的讨论反映了他们积极参与决策以及对个性化治疗方案的渴望。

结论

本研究揭示了中国成年斑秃患者对JAK抑制剂治疗有着浓厚的兴趣和期望。研究结果强调了在斑秃管理中进行全面患者教育、个体化风险评估和共同决策的重要性。了解患者的观点对于制定以患者为中心的护理策略和改善治疗结果至关重要。先前的研究已经证明了使用社交媒体数据探索患者对各种疾病的认知和健康行为的可行性和价值。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/dc44/12145103/8b44c870b3b7/PPA-19-1653-g0001.jpg

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