Long Millie D, Grewe Mary E, Cerciello Emily, Weisbein Laura, Catabay Kyra, Kappelman Michael D
University of North Carolina, Department of Medicine, Division of Gastroenterology and Hepatology, Chapel Hill, North Carolina, USA.
Center for Gastrointestinal Biology and Disease, University of North Carolina, Chapel Hill, North Carolina, USA.
Crohns Colitis 360. 2021 Sep 19;3(4):otab066. doi: 10.1093/crocol/otab066. eCollection 2021 Oct.
Patients with inflammatory bowel disease (IBD) may be at risk for complications due to the COVID-19 pandemic. We performed a qualitative study to better understand IBD patient experiences and concerns when navigating the COVID-19 pandemic, with the goal of prioritizing patients' information needs.
We conducted a series of semistructured virtual focus groups at 6 months, then member checking focus groups 1 year into the COVID-19 pandemic. We included questions on patients' experiences navigating the pandemic with IBD, differences in their experience as compared to peers, their concerns and fears, as well as preferred information sources. Transcribed focus groups were coded and content analyzed to summarize key areas of interest and identify themes. We focused on 4 areas in our content analysis process: fears, challenges, information preferences, and research questions.
A total of 26 IBD patient participants were included in the initial focus groups. Findings highlighted the many challenges faced by patients during the COVID-19 pandemic, ranging from access (bathrooms, medications, healthcare) to significant fears and concerns surrounding medications used for IBD worsening risks of COVID-19. Research questions of importance to patients centered on understanding risks for COVID-19 complications, particularly pertaining to medication utilization, with a shift over time toward understanding COVID-19 vaccination. In our member checking focus groups ( = 8 participants), themes were reiterated, with a central focus of research questions pertaining to COVID-19 vaccination.
Information needs for patients during the COVID-19 pandemic centered upon understanding disease-specific risks. Identified challenges and fears will inform future research agendas and communication with patients.
炎症性肠病（IBD）患者可能因新冠疫情面临并发症风险。我们开展了一项定性研究，以更好地了解IBD患者在应对新冠疫情时的经历和担忧，目标是确定患者的信息需求优先级。
在新冠疫情6个月时，我们进行了一系列半结构化虚拟焦点小组访谈，然后在疫情1年时进行成员核对焦点小组访谈。我们纳入了关于患者应对IBD疫情经历、与同龄人相比经历的差异、他们的担忧和恐惧以及首选信息来源的问题。对转录的焦点小组访谈进行编码和内容分析，以总结关键关注领域并确定主题。我们在内容分析过程中重点关注4个领域：恐惧、挑战、信息偏好和研究问题。
最初的焦点小组访谈共纳入26名IBD患者参与者。研究结果突出了患者在新冠疫情期间面临的诸多挑战，从获取（卫生间、药物、医疗保健）到对用于IBD的药物增加新冠疫情风险的重大恐惧和担忧。对患者重要的研究问题集中在了解新冠并发症风险，特别是与药物使用相关的风险，随着时间推移，转向了解新冠疫苗接种情况。在我们的成员核对焦点小组访谈（8名参与者）中，主题得到重申，核心是与新冠疫苗接种相关的研究问题。
新冠疫情期间患者的信息需求集中在了解特定疾病风险方面。已确定的挑战和恐惧将为未来的研究议程及与患者的沟通提供参考。
