Liu Yichen, Liu Xu, Kim Min-Kyu, Maharjan Beenu, Liu Xinjin, Duan Yuxin, Li Dingling, Lin Long, Zeng Jingyuan, Qin Hanfei, Cheng Yifei, Guo Linghong, Jiang Xian
Department of Dermatology, West China Hospital, Sichuan University, Chengdu, 610041, People's Republic of China.
Laboratory of Dermatology, Clinical Institute of Inflammation and Immunology, Frontiers Science Center for Disease-Related Molecular Network, West China Hospital, Sichuan University, Chengdu, 610041, People's Republic of China.
Patient Prefer Adherence. 2025 Sep 4;19:2737-2746. doi: 10.2147/PPA.S541439. eCollection 2025.
Patients with port-wine stain (PWS) and related syndromes often face multifaceted challenges in disease management, including prolonged treatment cycles, appearance-related distress, and psychological burdens. Social media has become an important platform for these individuals to obtain information and share experiences. However, there is a lack of systematic qualitative research exploring their genuine needs. This study analyzes content from social media to identify patients' core concerns during the diagnostic and therapeutic process, providing both theoretical foundations and practical references for developing patient-centered care models.
This study systematically analyzed PWS-related posts published between 2010 and 2023 across open social media platforms including Twitter, Facebook, and Baidu. A stratified sampling method was applied, and natural language processing was used to extract keywords and thematic sentences. Through expert review and AI-assisted classification, core patient needs in disease management were qualitatively summarized and categorized.
A total of 1528 social media posts were analyzed, yielding 4,190 extracted keywords categorized into six major themes. Treatment-related concerns were the most prominent (30.04%), particularly focusing on treatment choices, side effects, and delayed efficacy. Diagnostic confusion was also frequently mentioned (24.41%). A significant number of posts conveyed emotional distress and a strong desire for shared experiences, with emotional support themes accounting for 4.19%, highlighting their importance. Some patients proactively shared treatment journeys, contributing to a supportive and empathetic community atmosphere.
This study distilled key needs from authentic patient expressions and found that beyond clinical diagnosis and treatment, PWS patients also highly value emotional support and anxiety relief regarding relapse. These findings underscore the necessity of building patient-centered care systems that integrate emotional and psychological support while managing treatment expectations. Future studies should combine quantitative research and clinical data to refine variable analyses and develop educational and intervention strategies tailored to real online patient needs.
患有葡萄酒色斑（PWS）及相关综合征的患者在疾病管理中常常面临多方面挑战，包括治疗周期长、外观相关困扰以及心理负担。社交媒体已成为这些人获取信息和分享经验的重要平台。然而，缺乏探索他们真正需求的系统性定性研究。本研究分析社交媒体内容，以确定患者在诊断和治疗过程中的核心关注点，为开发以患者为中心的护理模式提供理论基础和实践参考。
本研究系统分析了2010年至2023年期间在包括推特、脸书和百度在内的开放社交媒体平台上发布的与PWS相关的帖子。采用分层抽样方法，并使用自然语言处理提取关键词和主题句。通过专家评审和人工智能辅助分类，对患者在疾病管理中的核心需求进行定性总结和分类。
共分析了1528条社交媒体帖子，提取了4190个关键词，分为六个主要主题。与治疗相关的担忧最为突出（30.04%），尤其关注治疗选择、副作用和疗效延迟。诊断困惑也经常被提及（24.41%）。大量帖子表达了情绪困扰以及对分享经历的强烈渴望，情绪支持主题占4.19%，凸显了其重要性。一些患者积极分享治疗历程，营造了一个支持性和同理心的社区氛围。
本研究从患者的真实表达中提炼出关键需求，发现除了临床诊断和治疗外，PWS患者还非常重视情绪支持以及对复发的焦虑缓解。这些发现强调了建立以患者为中心的护理系统的必要性，该系统在管理治疗期望的同时整合情绪和心理支持。未来的研究应结合定量研究和临床数据，以完善变量分析，并制定针对在线患者实际需求的教育和干预策略。
