TY - JOUR AU - Sieber, Chloé AU - Chiavi, Deborah AU - Haag, Christina AU - Kaufmann, Marco AU - Horn, Andrea B AU - Dressel, Holger AU - Zecca, Chiara AU - Calabrese, Pasquale AU - Pot, Caroline AU - Kamm, Christian Philipp AU - von Wyl, Viktor PY - 2022 DA - 2022/10/5 TI -补充多发性硬化症患者纵向评估的电子健康日记运动:嵌套的观察研究乔- Uhealth Mhealth JMIR SP - e38709六世- 10 - 10 KW -注册KW -多发性硬化症KW -数字医疗KW -电子健康日记KW -日记KW -参与KW -坚持千瓦patient-reported结果KW -自然语言处理KW -非结构化文本AB -背景:电子健康日记持有承诺补充标准化调查潜在健康研究但充满了无数的方法论的挑战。目的:该研究旨在调查参与者特征和其他与多发性硬化症患者对电子健康日记活动反应相关的因素，确定自由文本日记条目中反复出现的主题，并评估与调查收集的信息相比，结构化日记条目在当前症状和药物摄入方面的附加价值。方法:数据由瑞士多发性硬化症登记处在一套电子健康日记活动中收集，并在作为比较的瑞士多发性硬化症登记处定期半年随访调查中收集。将活动参与者的特征与非参与者的特征进行描述性比较。使用语言查询和单词计数2015软件(Pennebaker集团公司)和描述性关键词分析日记内容。使用Jaccard指数检查结构化日记数据与健康相关生活质量、症状和药物摄入量的随访数据之间的相似性。结果:活动参与者(n=134;日记记录:n=815)的女性更多，不是全职工作，没有更高的教育程度，有更严重的步态障碍，并且比符合条件的非参与者(中位年龄47岁，IQR 38-55岁;n = 524)。 Diary free-text entries (n=632; participants: n=100) most often contained references to the following standard Linguistic Inquiry and Word Count word categories: negative emotion (193/632, 30.5%), body parts or body functioning (191/632, 30.2%), health (94/632, 14.9%), or work (67/632, 10.6%). Analogously, the most frequently mentioned keywords (diary entries: n=526; participants: n=93) were “good,” “day,” and “work.” Similarities between diary data and follow-up survey data, collected 14 months apart (median), were high for health-related quality of life and stable for slow-changing symptoms such as fatigue or gait disorder. Similarities were also comparatively high for drugs requiring a regular application, including interferon beta-1a (Avonex) and glatiramer acetate (Copaxone), and for modern oral therapies such as fingolimod (Gilenya) and teriflunomide (Aubagio). Conclusions: Diary campaign participation seemed dependent on time availability and symptom burden and was enhanced by reminder emails. Electronic health diaries are a meaningful complement to regular structured surveys and can provide more detailed information regarding medication use and symptoms. However, they should ideally be embedded into promotional activities or tied to concrete research study tasks to enhance regular and long-term participation. SN - 2291-5222 UR - https://mhealth.www.mybigtv.com/2022/10/e38709 UR - https://doi.org/10.2196/38709 UR - http://www.ncbi.nlm.nih.gov/pubmed/36197713 DO - 10.2196/38709 ID - info:doi/10.2196/38709 ER -