Abstract
IMPORTANCE: Women with interstitial cystitis/bladder pain syndrome (ICBPS) face challenging treatment and feelings of isolation. Centering models of group medical visits have been successful in other spheres but have not been explored in ICBPS therapy. OBJECTIVE: We sought to describe opinions of women with ICBPS regarding Centering visits, including advantages, experience, and barriers to participation and efficacy. STUDY DESIGN: Patients who attended Centering visits participated in a focus group and/or filled out written commentary in evaluations, and control patients were individually interviewed. We coded transcripts using NVivo software for emergent themes. RESULTS: We conducted 4 control patient individual interviews, had one focus group of Centering patients, and collected comments from 34 post-Centering surveys. Emergent themes of interest included motivations and barriers to joining, cost, leadership, connecting with others, diversity, learning, alternative treatments, and areas for improvement. Regardless of participation in Centering, patients noted the importance of self-care and sharing with other women with ICBPS, and they emphasized feelings of isolation in their disease and discouraging health care experiences. Women in Centering noted that the biggest advantages of Centering were learning from other women with ICBPS, the creation of a welcoming and safe space, and the feeling that Centering was more of a support group than a medical visit. Women noted that barriers to Centering included cost and logistical issues, such as time and format. CONCLUSIONS: Women with ICBPS treatment note that Centering group visits provide a sense of learning and community that opens them to a wider variety of options.