Keller Michelle Sophie, Mosadeghi Sasan, Cohen Erica R, Kwan James, Spiegel Brennan Mason Ross
Department of Health Policy and Management, Fielding School of Public Health, University of California, Los Angeles, Los Angeles, CA, United States.
Division of Informatics, Department of Biomedical Sciences, Cedars-Sinai Medical Center, Los Angeles, CA, United States.
J Med Internet Res. 2018 Jun 11;20(6):e206. doi: 10.2196/jmir.9870.
Inflammatory bowel disease (IBD) affects many individuals of reproductive age. Most IBD medications are safe to use during pregnancy and breastfeeding; however, observational studies find that women with IBD have higher rates of voluntary childlessness due to fears about medication use during pregnancy. Understanding why and how individuals with IBD make decisions about medication adherence during important reproductive periods can help clinicians address patient fears about medication use.
The objective of this study was to gain a more thorough understanding of how individuals taking IBD medications during key reproductive periods make decisions about their medication use.
We collected posts from 3000 social media sites posted over a 3-year period and analyzed the posts using qualitative descriptive content analysis. The first level of analysis, open coding, identified individual concepts present in the social media posts. We subsequently created a codebook from significant or frequently occurring codes in the data. After creating the codebook, we reviewed the data and coded using our focused codes. We organized the focused codes into larger thematic categories.
We identified 7 main themes in 1818 social media posts. Individuals used social media to (1) seek advice about medication use related to reproductive health (13.92%, 252/1818); (2) express beliefs about the safety of IBD therapies (7.43%, 135/1818); (3) discuss personal experiences with medication use (16.72%, 304/1818); (4) articulate fears and anxieties about the safety of IBD therapies (11.55%, 210/1818); (5) discuss physician-patient relationships (3.14%, 57/1818); (6) address concerns around conception, infertility, and IBD medications (17.38%, 316/1818); and (7) talk about IBD symptoms during and after pregnancy and breastfeeding periods (11.33%, 206/1818).
Beliefs around medication safety play an important role in whether individuals with IBD decide to take medications during pregnancy and breastfeeding. Having a better understanding about why patients stop or refuse to take certain medications during key reproductive periods may allow clinicians to address specific beliefs and attitudes during office visits.
炎症性肠病（IBD）影响许多育龄个体。大多数IBD药物在怀孕和哺乳期使用是安全的；然而，观察性研究发现，由于担心孕期用药，IBD女性自愿不育的比例更高。了解IBD患者在重要生殖期如何以及为何做出药物依从性决策，有助于临床医生解决患者对用药的担忧。
本研究的目的是更深入地了解在关键生殖期服用IBD药物的个体如何做出用药决策。
我们收集了3000个社交媒体网站在3年期间发布的帖子，并使用定性描述性内容分析法对这些帖子进行分析。分析的第一阶段，即开放式编码，确定社交媒体帖子中出现的个体概念。随后，我们根据数据中重要或频繁出现的代码创建了一个编码手册。创建编码手册后，我们回顾数据并使用我们的重点代码进行编码。我们将重点代码组织成更大的主题类别。
我们在1818条社交媒体帖子中确定了7个主要主题。个体使用社交媒体来（1）寻求与生殖健康相关的用药建议（13.92%，252/1818）；（2）表达对IBD治疗安全性的看法（7.43%，135/1818）；（3）讨论用药的个人经历（16.72%，304/1818）；（4）阐明对IBD治疗安全性的恐惧和焦虑（11.55%，210/1818）；（5）讨论医患关系（3.14%，57/1818）；（6）解决围绕受孕、不孕和IBD药物的担忧（17.38%，316/1818）；以及（7）谈论怀孕和哺乳期及之后的IBD症状（11.33%，206/1818）。
关于药物安全性的看法在IBD患者是否在怀孕和哺乳期决定用药方面起着重要作用。更好地了解患者在关键生殖期停止或拒绝服用某些药物的原因，可能使临床医生在门诊时解决特定的看法和态度问题。
