Engaging Patient and Caregiver Partners in Codeveloping a Patient Educational Video for Improving Clostridioides...

Area of Science:

• Medical Education
• Patient Engagement
• Infectious Disease Management

Background:

• Recurrent Clostridioides difficile infection (rCDI) presents significant challenges for patients and caregivers due to limited credible educational resources.
• Uncertainty surrounding treatments like fecal microbiota transplantation (FMT) highlights a critical need for accessible information.
• Co-developing educational materials with patient and caregiver input ensures resources meet their informational and emotional needs.

Purpose of the Study:

• To cocreate a patient-centered educational resource for recurrent Clostridioides difficile infection (rCDI) management.
• To improve education on rCDI, including treatment options like fecal microbiota transplantation (FMT).
• To involve patients and caregivers with lived experience in the development process.

Main Methods:

• A series of three focus group sessions were conducted with five patient or caregiver participants over 13 months.
• Audio recordings and transcripts were analyzed using a semantic thematic analysis framework.
• An iterative process refined the educational resource based on participant feedback, starting with a video format.

Main Results:

• Participants highlighted a lack of credible information on rCDI treatments, risks (especially FMT), recurrence impacts, and emotional toll.
• A video format was preferred for educational materials.
• The co-developed video was valued for its clear language, step-by-step guidance, and accessibility, incorporating mental health considerations.

Conclusions:

• Patient and caregiver involvement is feasible and valuable for creating effective rCDI educational resources, including those on FMT.
• While a video format was well-received, further research is needed to determine the most effective educational resource formats.
• Future research should focus on including diverse patient populations and evaluating the impact of different formats on knowledge and satisfaction.