JMIR Publications

ABSTRACT

Background:

Clostridioides difficile infection (CDI) is the most common cause of healthcare acquired infectious diarrhea, resulting from intestinal dysbiosis. Recurrent Clostridioides difficile (rCDI) is defined as CDI recurring within 8 weeks of completing the previous course of CDI treatment. The most effective therapy for rCDI is fecal microbiota transplantation (FMT). Despite its increasing prevalence, patients with rCDI and their caregivers often face uncertainty in disease management due to a lack of reliable patient education resources and the spread of misinformation, which can adversely affect their psychological and emotional well-being.

Objective:

The study team aims to co-create education resources with patient partners who have lived experience or cared for someone with rCDI through an iterative process, considering any perceived areas of concern and knowledge gaps to improve patient awareness and understanding.

Methods:

This feasibility study examined the co-creation process of patient-centered education resources between the study team and patient or caregiver participants through a series of focus group (FG) sessions. Six participants consented to participate in the study; however, one withdrew due to scheduling conflicts, resulting in five participants who took part in three serial focus group sessions (3-5 participants each) over 13 months. Each FG session was audio-recorded, transcribed, and analyzed using NVivo 14 quantitative analysis software. A semantic thematic analysis framework was applied to interpret the results. Key areas of concerns, and preferred formats were identified following the first FG session. The first version of education resources was developed by the study team to address areas of concerns, which was further refined iteratively following feedback from subsequent FG sessions with the study participants.

Results:

Participants expressed concerns about the lack of reliable information on treatment options and their associated risks, particularly with FMT. They also noted inadequate coverage of CDI recurrence and its physical, psychological, and emotional impacts. Participants expressed a preference for educational resources in video format. The co-developed video, created through an iterative process, was well received, and valued for its clear language, step-by-step guidance, and overall accessibility. Based on participant feedback, refinements were made to improve pacing, ensure consistent narration, and incorporate emotional and mental health considerations.

Conclusions:

Our study demonstrated the feasibility and utility of patient and caregiver involvement in co-creating education resources in the management of rCDI, with FMT being a treatment option. Despite efforts to address knowledge gaps, and preferences expressed for a video format, uncertainties remain regarding the most effective education resource format. The integration of patient and study team perspectives contributed to a co-developed video that addresses unmet needs that are patient centered. However, diverse patient experiences remain underrepresented. Future research should consider including more diverse participants, as well as evaluating effectiveness of knowledge improvement through various education resource formats, and patient healthcare experiences and satisfaction.