基于大语言模型辅助的社交媒体日光性皮炎患者体验质性内容分析

Large Language Model-Assisted Qualitative Content Analysis of Patient Experiences with Solar Dermatitis through Social Media

摘要: 目的：利用大语言模型辅助质性内容分析方法，系统分析中文社交媒体中日光性皮炎患者自发分享的患病体验、治疗经历及未满足需求，为优化患者管理和健康教育提供循证依据。方法：系统检索小红书平台中日光性皮炎相关公开帖子。检索词包括“日光性皮炎”“紫外线过敏”“太阳过敏”“光敏性皮炎”“日晒过敏”“晒伤”“日晒伤”及“光过敏”。排除广告、医生科普帖、信息不充分及无关内容后，纳入325条原始帖子进行AI辅助筛选，随后进行关键词提取、同义词合并和主题归类。由研究者对20%随机样本进行人工核验。结果：共提炼出六大核心主题：1) 症状体验与自我认知(51.1%)：瘙痒、皮疹、面部红肿等多维度症状描述及从“晒伤”到“疾病”的认知转变；2) 就医路径与诊断延迟(69.2%)：就医信息密集，涉及诊断确认、治疗方案获取与复诊随访；3) 诱因识别与回避行为(44.3%)：紫外线暴露、光敏物质识别困惑与防晒行为管理；4) 治疗尝试与自我管理(27.0%)：局部用药、物理防护与中药偏方并存的多元化自我管理策略，伴随“激素恐惧”和治疗信心不足；5) 信息需求与临床沟通缺口(5.9%)：患者对防晒指导、鉴别诊断及疾病预后的信息需求未能满足；6) 心理负担与社交影响(4.6%)：外观羞耻、社交回避与人际不被理解的困扰。结论：社交媒体数据可有效揭示日光性皮炎患者在临床诊疗之外的真实体验与未满足需求，日光性皮炎患者的核心诉求包括获得明确的诊断、有效的治疗方案和可操作的防晒指导，提示今后临床实践应重视患者教育、激素恐惧管理及数字化健康干预。

Abstract: Objective: To systematically analyze patient experiences, treatment experiences, and unmet needs shared by individuals with solar dermatitis on social media using a large language model (LLM)-assisted qualitative content analysis approach, and to identify implications for patient management and health education. Methods: Public posts related to solar dermatitis were retrieved from Xiaohongshu, a leading Chinese social media platform. Search terms included “solar dermatitis”, “ultraviolet allergy”, “sun allergy”, “photosensitive dermatitis”, “sun exposure allergy”, “sunburn”, “solar burn” and “light allergy”. After excluding advertisements, physician-generated educational posts, content with insufficient information, and irrelevant posts, 325 posts underwent LLM-assisted screening, followed by keyword extraction, synonym merging, and thematic classification. Manual verification was conducted on a random 20% subsample. Results: Six overarching themes were identified. 1) Symptom experience and self-awareness (51.1%), encompassing multidimensional descriptions of pruritus, rash, and facial erythema, as well as the cognitive transition from sunburn to a recognized medical condition. 2) Healthcare-seeking trajectories and diagnostic delay (69.2%), characterized by dense healthcare-seeking narratives involving diagnostic confirmation, treatment acquisition, and follow-up visits. 3) Trigger identification and avoidance behaviors (44.3%), reflecting confusion about photosensitizing agents and challenges in sun protection management. 4) Treatment attempts and self-management (27.0%), revealing a pluralistic landscape of topical medications, physical protection, and traditional remedies, accompanied by corticophobia and diminished treatment confidence. 5) Information needs and clinical communication gaps (5.9%), highlighting unmet needs for evidence-based sun protection guidance, differential diagnosis, and prognostic information. 6) Psychological burden and social impact (4.6%), capturing appearance-related distress, social avoidance, and perceived lack of interpersonal understanding. Conclusions: Social media data can effectively reveal the real-world experiences and unmet needs of patients with solar dermatitis beyond the clinical setting. Patients’ core concerns focus on obtaining a definitive diagnosis, effective treatment, and actionable sun protection guidance, suggesting that clinical practice should prioritize patient education, corticophobia management, and digital health interventions.