Addressing Issues Important to Young Adults With IBD: The Impact of a Multistakeholder Roundtable on Sexual Health, Reproductive Health, and Family Planning Roundtable

Background: The Crohn’s and Colitis Young Adult Network (CCYAN) has conducted a series of roundtables to give healthcare professionals, patients with inflammatory bowel diseases (IBD), and other health advocates opportunities to discuss pressing issues impacting young adults with IBD. Before the roundtable session, participants are sent pre-reads for background information. Each roundtable is conducted over Zoom and begins with a short lecture from an expert in the field and a young adult patient. After the didactic presentation, participants engage in a moderated discussion about the topic. Each CCYAN roundtable hosts 12-15 individuals from different backgrounds, professions, and perspectives related to IBD. The aim of this study was to evaluate the impact of the CCYAN roundtable on Sexual Health, Reproductive Health, and Family Planning. Methods: Two anonymous electronic surveys (pre- and post-roundtable) were sent to participants of the CCYAN Sexual Health, Reproductive Health, and Family Planning Roundtable conducted August-September 2023. The survey questions focused on engagement in the roundtable and knowledge on the topic, and included multiple choice questions, Likert scale questions with response options ranging from 1-10 (1 representing the lowest), and open-ended questions. Descriptive statistics were conducted on quantitative data, and thematic analysis was used on the qualitative data from the post-roundtable survey. Results: The pre-roundtable survey was completed by 10 individuals, and the post-roundtable survey completed by 6. Self-identified roles of respondents included researcher, healthcare professionals (e.g., physician, IBD nurse coordinator, sex therapist, dietician), patient advocates, and community member/partner group. When asked about the importance of the roundtable topic, participants found the topic more important after the roundtable than before as indicated by a greater mean importance score: 9.8 (SD: 0.4) post-roundtable versus 9.2 (SD: 1.7) pre-roundtable. Additionally, respondents’ overall knowledge of the topic was greater after the roundtable session, with a mean post-roundtable knowledge score of 5.8 (SD: 2.6) compared to a mean pre-roundtable score of 4.7 (SD: 2.8). The following themes (subthemes) emerged: knowledge exchange (value of patient experiences, value of provider perspectives, diverse and supportive group), improvements to roundtable (sharing anonymous and sensitive information, provide more resources, more perspectives needed of patients, caregivers/support system, and providers), and future considerations (further conversations needed between providers and patients, significance of the topic, need for more awareness and education). All individuals completing the post-roundtable survey indicated that the roundtable was a good use of their time and felt that their views were heard (mean score = 10). Conclusions: The CCYAN Roundtable on Sexual Health, Reproductive Health, and Family Planning provided a supportive environment for the exchange of knowledge and perspectives between individuals of various backgrounds and positions. The roundtable discussion highlighted critical areas for further research and education on sexual health. Efforts should be made to include diverse groups of roundtable participants and an open space for all participants to share personal experiences and perspectives. These roundtables represent a unique opportunity to generate patient-driven solutions. There is a need to understand the implications of the roundtables on healthcare practice, policies, and advocacy.