A Patient-Prioritized Agenda for Information Needs During the COVID-19 Pandemic: A Qualitative Study of Patients With Inflammatory Bowel Disease

Millie D Long; Mary E Grewe; Emily Cerciello; Laura Weisbein; Kyra Catabay; Michael D Kappelman

doi:10.1093/crocol/otab066

A Patient-Prioritized Agenda for Information Needs During the COVID-19 Pandemic: A Qualitative Study of Patients With Inflammatory Bowel Disease

Crohns Colitis 360. 2021 Sep 19;3(4):otab066. doi: 10.1093/crocol/otab066. eCollection 2021 Oct.

Authors

Millie D Long^{1

2}, Mary E Grewe³, Emily Cerciello⁴, Laura Weisbein², Kyra Catabay², Michael D Kappelman^{2

5}

Affiliations

¹ University of North Carolina, Department of Medicine, Division of Gastroenterology and Hepatology, Chapel Hill, North Carolina, USA.
² Center for Gastrointestinal Biology and Disease, University of North Carolina, Chapel Hill, North Carolina, USA.
³ University of North Carolina, NC TraCS Institute-Community and Stakeholder Engagement Program (CaSE), Chapel Hill, North Carolina, USA.
⁴ Crohn's and Colitis Foundation, New York, New York, USA.
⁵ University of North Carolina, Department of Pediatrics, Division of Gastroenterology and Hepatology, Chapel Hill, North Carolina, USA.

Abstract

Background: 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.

Methods: 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.

Results: 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 (n = 8 participants), themes were reiterated, with a central focus of research questions pertaining to COVID-19 vaccination.

Conclusions: 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.

Keywords: COVID-19; Crohn’s disease; focus groups; inflammatory bowel disease; ulcerative colitis.

Abstract

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