Analyzing social media conversations to gain insights into the experiences of patients with hereditary angioedema.

IF 2.6 3区 医学 Q2 ALLERGY
Allergy and asthma proceedings Pub Date : 2025-05-01 Epub Date: 2025-04-28 DOI:10.2500/aap.2025.46.250028
Julia Braverman, Darcy Ellis, Simona Gavata-Steiger, Angeline Babitha Dhas, Revanth Muthu, Quazi S Ataher
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引用次数: 0

Abstract

Background: Hereditary angioedema (HAE) is a rare genetic disease characterized by recurrent, unpredictable, painful, and potentially life-threatening angioedema attacks, which substantially impair patients' quality of life. Gathering patients' perspectives is important to understand lived experiences, the patient journey, and preferences to determine optimal HAE management. Social media platforms have become important mediums through which patient and carer groups share experiences and advice. Objective: We conducted the first social media listening (SML) study in an HAE setting to identify and characterize the experiences of patients with HAE to better understand disease and treatment burden and their unmet needs. Methods: This was a retrospective analysis of social media content that relates to the experience of individuals with HAE from January 2018 to October 2023. We used keyword-based searches of social media platforms to identify posts that relate to burdens, unmet needs, and other themes shared by patients, caregivers, or health-care professionals. After anonymization and removal of duplicates, content was extracted and categorized by subject matter experts for qualitative and quantitative analysis according to themes. Results: Of 6,012 posts collected, 892 were identified as relevant patient-mentioned posts. Of these, 459 posts related to burden; the most common topic was disease burden and discussed symptoms such as persistent swelling, painful attacks, and frequent attacks. Other burden-related topics included health service, medication, and injections. Unmet needs were discussed in 270 posts; the most common were treatment-related needs such as insurance denials, inadequate medication availability, and treatment costs. Other unmet needs related to education, health service, and diagnosis. Conclusion: Evaluation of the lived experience of patients with HAE and their caregivers via SML can be a valuable tool to aid optimizing HAE management. Our findings add to existing evidence that the disease burden is still a considerable issue for patients with HAE, who continue to have unmet treatment needs.

分析社交媒体对话,以深入了解遗传性血管性水肿患者的经历。
背景:遗传性血管性水肿(HAE)是一种罕见的遗传性疾病,其特点是复发性、不可预测、疼痛且可能危及生命的血管性水肿发作,严重损害患者的生活质量。收集患者的观点对于了解患者的生活经历、患者的治疗过程以及确定最佳HAE治疗的偏好非常重要。社交媒体平台已经成为患者和护理人员团体分享经验和建议的重要媒介。目的:我们在HAE环境中进行了首个社交媒体聆听(SML)研究,以识别和描述HAE患者的经历,从而更好地了解疾病和治疗负担以及他们未满足的需求。方法:回顾性分析2018年1月至2023年10月与HAE患者经历相关的社交媒体内容。我们使用基于关键字的社交媒体平台搜索来识别与负担、未满足的需求以及患者、护理人员或医疗保健专业人员共享的其他主题相关的帖子。在匿名化和去除重复后,内容被提取出来,并由主题专家根据主题进行定性和定量分析。结果:在收集到的6012篇帖子中,892篇被确定为相关患者提及帖子。其中,459个职位与负担有关;最常见的话题是疾病负担,并讨论了持续肿胀、疼痛发作和频繁发作等症状。其他与负担有关的主题包括卫生服务、药物和注射。270个员额讨论了未满足的需要;最常见的是与治疗相关的需求,如拒绝保险、药物供应不足和治疗费用。其他未满足的需求与教育、保健服务和诊断有关。结论:通过SML评估HAE患者及其照护者的生活经历可能是帮助优化HAE管理的一个有价值的工具。我们的发现增加了现有证据,表明疾病负担仍然是HAE患者的一个相当大的问题,他们的治疗需求仍然没有得到满足。
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来源期刊
CiteScore
5.70
自引率
35.70%
发文量
106
审稿时长
6-12 weeks
期刊介绍: Allergy & Asthma Proceedings is a peer reviewed publication dedicated to distributing timely scientific research regarding advancements in the knowledge and practice of allergy, asthma and immunology. Its primary readership consists of allergists and pulmonologists. The goal of the Proceedings is to publish articles with a predominantly clinical focus which directly impact quality of care for patients with allergic disease and asthma. Featured topics include asthma, rhinitis, sinusitis, food allergies, allergic skin diseases, diagnostic techniques, allergens, and treatment modalities. Published material includes peer-reviewed original research, clinical trials and review articles.
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