移植物抗宿主病（GVHD）是异基因造血干细胞移植后短期和长期发病和死亡的主要原因。皮质类固醇治疗以外的治疗选择仍然有限，而且长期治疗往往会导致生活质量 (QoL) 受损。需要更好地了解 GVHD 患者的需求和经历，以改善患者护理。本研究的目的是探索不同的社交媒体 (SM) 渠道，以收集和分析 14 个欧洲国家的患者和其他利益相关者的需求和经历。我们对公共领域的 SM 数据进行了回顾性分析。 Talkwalker 社交分析工具使用预定义的搜索字符串从开放访问论坛、博客和各种社交网站收集数据。来自聚合器工具的原始数据集会自动筛选帖子的相关性，生成经过手动审核的精选数据集，以识别符合预定义包含和排除标准的帖子。然后使用该最终数据集进行深入分析。2019 年 4 月至 2021 年 4 月期间，共识别出 9016 个与 GVHD 相关的帖子。重复数据删除和相关性检查产生了 325 个富有洞察力的帖子，其中 Twitter 贡献了 250 个 (77%) 帖子;博客，49 (15%) 个帖子；论坛，13 (4%) 个帖子； Facebook，7 个帖子（2%）； Instagram 和 YouTube，4 条 (1%) 帖子。 GVHD 患者是主要利益相关者，贡献了所有 SM 帖子的 63%。在 234 篇帖子中，治疗是患者旅程中讨论最多的阶段 (68%)，其次是症状 (33%)，以及诊断和检查 (21%)。在与治疗相关的帖子中 (n=159)，类固醇治疗的报道最为频繁 (54/159，34%)。与治疗特征 (n=110) 相关的帖子确定了疗效 (45/110, 41%)、副作用 (38/110, 35%) 以及频率和剂量 (32/110, 29%)，这是最常讨论的特征。 24% (77/325) 的帖子描述了与 GVHD 相关的症状，包括皮肤相关病症 (49/77, 64%)、干眼或视力变化 (13/77, 17%)、疼痛和痉挛 (16 /77, 21%)，以及疲劳或肌肉无力(12/77, 16%)。 51% (165/325) 的帖子讨论了 GVHD 对生活质量的影响，其中 69% (114/165)、50% (82/165) 提到了情感、身体和功能、社会和财务影响、5% (8/165) 和 2% (3/165)。在分析的对话中，24% (77/325) 的患者或护理人员报告了未满足的需求，其中与治疗相关的副作用是这些帖子中最常见的 (35/77, 45%)。 SM 倾听是识别的有用工具医疗需求。 GVHD 的治疗，包括治疗相关的副作用，及其对生活质量的情绪和身体影响，是 GVHD 利益相关者在 SM 上提到的主要话题。我们鼓励医疗保健提供者和 GVHD 患者之间的互动中对这些主题进行结构化讨论。不适用。©Zinaida Perić、Grzegorz Basak、Christian Koenecke、Ivan Moiseev、Jyoti Chauhan、Sathyaraj Asaithambi、Alexandros Sagkriotis、Sibel Gunes、Olaf Penack。最初发表于 JMIR Cancer (https://cancer.jmir.org)，2023 年 11 月 10 日。

Graft-versus-host disease (GVHD) is the major cause of short- and long-term morbidity and mortality after allogeneic hematopoietic stem cell transplantation. Treatment options beyond corticosteroid therapy remain limited, and prolonged treatment often leads to impaired quality of life (QoL). A better understanding of the needs and experiences of patients with GVHD is required to improve patient care.The aim of this study is to explore different social media (SM) channels for gathering and analyzing the needs and experiences of patients and other stakeholders across 14 European countries.We conducted a retrospective analysis of SM data from the public domain. The Talkwalker social analytics tool collected data from open-access forums, blogs, and various social networking sites using predefined search strings. The raw data set derived from the aggregator tool was automatically screened for the relevancy of posts, generating the curated data set that was manually reviewed to identify posts that fell within the predefined inclusion and exclusion criteria. This final data set was then used for the deep-dive analysis.A total of 9016 posts relating to GVHD were identified between April 2019 and April 2021. Deduplication and relevancy checks resulted in 325 insightful posts, with Twitter contributing 250 (77%) posts; blogs, 49 (15%) posts; forums, 13 (4%) posts; Facebook, 7 (2%) posts; and Instagram and YouTube, 4 (1%) posts. Patients with GVHD were the primary stakeholders, contributing 63% of all SM posts. In 234 posts, treatment was the most discussed stage of the patient journey (68%), followed by symptoms (33%), and diagnosis and tests (21%). Among treatment-related posts (n=159), steroid therapy was most frequently reported (54/159, 34%). Posts relating to treatment features (n=110) identified efficacy (45/110, 41%), side effects (38/110, 35%), and frequency and dosage (32/110, 29%), as the most frequently discussed features. Symptoms associated with GVHD were described in 24% (77/325) of posts, including skin-related conditions (49/77, 64%), dry eyes or vision change (13/77, 17%), pain and cramps (16/77, 21%), and fatigue or muscle weakness (12/77, 16%). The impacts of GVHD on QoL were discussed in 51% (165/325) of all posts, with the emotional, physical and functional, social, and financial impacts mentioned in 69% (114/165), 50% (82/165), 5% (8/165), and 2% (3/165) of these posts, respectively. Unmet needs were reported by patients or caregivers in 24% (77/325) of analyzed conversations, with treatment-related side effects being the most common (35/77, 45%) among these posts.SM listening is a useful tool to identify medical needs. Treatment of GVHD, including treatment-related side effects, as well as its emotional and physical impact on QoL, are the major topics that GVHD stakeholders mention on SM. We encourage a structured discussion of these topics in interactions between health care providers and patients with GVHD.Not applicable.©Zinaida Perić, Grzegorz Basak, Christian Koenecke, Ivan Moiseev, Jyoti Chauhan, Sathyaraj Asaithambi, Alexandros Sagkriotis, Sibel Gunes, Olaf Penack. Originally published in JMIR Cancer (https://cancer.jmir.org), 10.11.2023.