Development of an internet-based cohort of patients with inflammatory bowel diseases (CCFA Partners): Methodology and initial results
Development of an internet-based cohort of patients with inflammatory bowel diseases (CCFA Partners): Methodology and initial results
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DOI：
10.1002/ibd.22895
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发表时间：
2012-11-01
影响因子：
4.9
通讯作者：
Sandler, Robert S.
中科院分区：
文献类型：
--
作者：
Long, Millie D.;Kappelman, Michael D.;Sandler, Robert S.
背景：互联网的广泛使用为研究提供了独特的机会。我们的目标是随着时间的推移建立和跟踪一组自我报告的炎症性肠病(IBD)患者的互联网队列(e队列)。方法：我们通过克罗恩和美国结肠炎基金会(CCFA)的电子邮件名册、CCFA网站推广、社交媒体和其他宣传机制招募，建立了一个成人IBD(CCFA合作伙伴)电子队列。基线调查包括关于病程和活动、饮食和锻炼以及患者报告结果(PRO)的模块。使用描述性统计对队列的基线特征进行了总结。结果：截至2011年8月，共有7819名成人IBD患者加入CCFA合作伙伴。中位年龄42岁(四分位数范围[IQR]3054)，女性5074人(72.3%)。共有4933例(63.1%)患有克罗恩病(CD)，2675例(34.2%)患有溃疡性结肠炎(UC)，211例(2.7%)患有不明原因的IBD。CD的平均短CD活动指数为151.9(标准差为106.4)，缓解率为2274(59.4%)。UC患者的单纯性结肠炎活动指数平均为3.6(SD 2.8)，其中937例(42.9%)缓解。简式IBD问卷(SIBDQ)平均得分为48.7分(SD 11.8)。SIBDQ与疾病活动性呈负相关(P<；0.01)。平均Morisky服药依从性评分(MMAS)为5.7(SD 2.0)。MMAS评分与疾病活动性呈负相关(P<；0.01)。结论：CCFA合作伙伴是一个新的电子队列。招生工作正在进行中，每年进行两次调查。CCFA合作伙伴是一个独特的资源，可以研究疾病管理中的优势和随着时间的推移而发生的变化。(2012年炎症性肠病；)
Background: The widespread use of the Internet allows for unique research opportunities. We aimed to develop and follow an Internet-based cohort (e-cohort) of patients with self-reported inflammatory bowel diseases (IBD) over time. Methods: We established an e-cohort of adults with IBD (CCFA Partners) by recruiting through Crohn's and Colitis Foundation of America (CCFA) email rosters, CCFA Website promotion, social media, and other publicity mechanisms. The baseline survey included modules on disease course and activity, diet and exercise, and patient-reported outcomes (PROs). Baseline characteristics of the cohort are summarized using descriptive statistics. Results: A total of 7819 adults with IBD joined CCFA Partners through August, 2011. The median age was 42 years (interquartile range [IQR] 3054), 5074 (72.3%) were female. A total of 4933 (63.1%) had Crohn's disease (CD), 2675 (34.2%) had ulcerative colitis (UC), and 211 (2.7%) had IBD unspecified. For CD, the mean short CD Activity Index (CDAI) was 151.9 (standard deviation [SD] 106.4), with 2274 (59.4%) in remission. For UC, the mean simple clinical colitis activity index (SCCAI) was 3.6 (SD 2.8), with 937 (42.9%) in remission. The mean short IBD questionnaire (SIBDQ) score was 48.7 (SD 11.8). SIBDQ was inversely correlated with disease activity (P < 0.01). The mean Morisky medication adherence score (MMAS) was 5.7 (SD 2.0). MMAS scores were inversely correlated with disease activity (P < 0.01). Conclusions: CCFA Partners is a novel e-cohort. Enrollment is ongoing, with surveys twice yearly. CCFA Partners represents a unique resource to study PROs and changes in disease management over time. (Inflamm Bowel Dis 2012;)