TY - JOUR AU - Booth, Alison AU - Bell, Timothy AU - Halhol, Sonia AU - Pan, Shiyu AU - Welch, Verna AU - Merinopoulou, Evie AU - Lambrelli, Dimitra AU - Cox, Andrew PY - 2019 DA - 2019/11/22 TI -利用社交媒体揭示不适合强化化疗的急性髓系白血病或骨髓增生异常综合征患者的治疗经验和决定:以患者为中心的定性数据分析JO - J医学互联网Res SP - e14285 VL - 21 IS - 11 KW -社交媒体KW -健康相关的生活质量KW -以患者为中心的KW -白血病KW -髓系KW -急性KW -骨髓增生异常综合征KW -自然语言处理KW -患者偏好KW -定性研究AB -背景:直到最近，对于不适合强化化疗的急性髓系白血病和骨髓增生异常综合征(AML和MDS)患者，治疗方案有限。由于病情发展迅速，在做出治疗决定时，很难确定对患者来说什么是最重要的。通过更深入地了解患者的观点，可以更好地满足他们的需求，这在决策过程中是有价值的。美国食品和药物管理局最近鼓励使用社交媒体作为一种工具，以了解患者对所经历的症状和疾病影响的看法。目的:本研究旨在利用不适合强化化疗的AML或MDS患者及其护理人员的疾病特定社交媒体帖子，捕捉他们认为最重要的因素，并提供当前的证据来告知和描述这些观点。方法:从3个大型AML或MDS特定网站的公开讨论中提取AML或MDS患者及其护理人员的帖子。这些帖子是人工审查的，只包括不适合进行强化化疗的患者。来自220名AML患者/护理人员的1443篇文章和来自127名MDS患者/护理人员的2733篇文章符合研究纳入标准。 A qualitative data analysis (QDA) of a sample of 85 patients’/caregivers’ posts was conducted to identify themes, and a targeted QDA of posts from 79 users focused on treatment decision discussions. Posts were manually reviewed, and relevant text segments were coded and grouped into categories and overall themes. Results: Eighty-six percent (73/85) of users in the overall QDA had relevant information about the key objectives. The most commonly discussed treatment experience theme was the humanistic burden of AML or MDS in terms of emotional/physical impact and impact on family (86%, 63/73 of users), followed by treatment decisions (56%, 41/73) and unmet needs (50%, 37/73). In the QDA of treatment decisions, 60 posts from 45 users contained relevant information. Patients commonly reported the desire to reach specific milestones, including birthdays and weddings. They wished for a better quality of life over quantity of life, did not want the risk of suffering from side effects, and expressed a clear preference to be at home rather than in a hospital or care home. Conclusions: This study was a novel application of disease-specific social media. It highlighted experiences in the current treatment of AML and MDS, including information gaps, patient/caregiver uncertainty, and the importance of understanding patients’/caregivers’ goals and opinions. A clear finding from this research was the importance of reaching certain personal life goals and being at home with family and friends. The analysis showed that patients/caregivers face additional challenges, including humanistic impacts and a lack of information regarding treatment options. SN - 1438-8871 UR - //www.mybigtv.com/2019/11/e14285/ UR - https://doi.org/10.2196/14285 UR - http://www.ncbi.nlm.nih.gov/pubmed/31755871 DO - 10.2196/14285 ID - info:doi/10.2196/14285 ER -