TY -的AU - 2,安妮AU -窝打浆机,Dide盟——Verberne苏珊AU - Desar,英格丽德盟——小量,奥尔加盟-范德格拉夫,Winette T盟——Oosten,阿斯特丽德盟——Reyners,安娜·K L AU - Steeghs Neeltje盟,房龙Wouter AU - van Oortmerssen,杰拉德盟——Gelderblom汉斯盟——Kraaij韦塞尔PY - 2022 DA - 2022/12/15 TI -样本偏差在基于web的我们相信荷兰胃肠道间质瘤患者的健康数据:社会媒体-患者论坛-样本偏差-代表性-药物警戒性-罕见癌症背景:越来越多的人认为，社交媒体是患者产生的健康数据的潜在资源，例如，用于药物警戒。虽然网络患者群体的代表性经常被认为是一个值得关注的问题，但这一领域的研究是有限的。目的:本研究旨在探讨以患者为中心的社交媒体在荷兰胃肠道间质瘤(GIST)患者中的样本偏倚。方法:在荷兰对328名2-13年前诊断为GIST的患者进行了一项基于人群的调查，以调查他们与其他患者的数字通信使用情况。使用逻辑回归分析来分析论坛用户和非用户之间的临床和人口统计学差异。结果:总体而言，17.9%(59/328)的受访者报告通过社交媒体与其他患者接触。此外，78%(46/59)的论坛用户使用GIST患者论坛。我们发现论坛用户(n=46)和非论坛用户(n=273)在年龄、性别、社会经济地位和诊断后的时间上没有统计学上的显著差异。患者论坛用户在(自我报告的)治疗阶段与非用户有显著差异(P=.001)。 Of the 46 forum users, only 2 (4%) were cured and not being monitored; 3 (7%) were on adjuvant, curative treatment; 19 (41%) were being monitored after adjuvant treatment; and 22 (48%) were on palliative treatment. In contrast, of the 273 patients who did not use disease-specific forums to communicate with fellow patients, 56 (20.5%) were cured and not being monitored, 31 (11.3%) were on curative treatment, 139 (50.9%) were being monitored after treatment, and 42 (15.3%) were on palliative treatment. The odds of being on a patient forum were 2.8 times as high for a patient who is being monitored compared with a patient that is considered cured. The odds of being on a patient forum were 1.9 times as high for patients who were on curative (adjuvant) treatment and 10 times as high for patients who were in the palliative phase compared with patients who were considered cured. Forum users also reported a lower level of social functioning (84.8 out of 100) than nonusers (93.8 out of 100; P=.008). Conclusions: Forum users showed no particular bias on the most important demographic variables of age, sex, socioeconomic status, and time since diagnosis. This may reflect the narrowing digital divide. Overrepresentation and underrepresentation of patients with GIST in different treatment phases on social media should be taken into account when sourcing patient forums for patient-generated health data. A further investigation of the sample bias in other web-based patient populations is warranted. SN - 2561-326X UR - https://formative.www.mybigtv.com/2022/12/e36755 UR - https://doi.org/10.2196/36755 UR - http://www.ncbi.nlm.nih.gov/pubmed/36520526 DO - 10.2196/36755 ID - info:doi/10.2196/36755 ER -