Hospitalization experiences of patients with interstitial cystitis undergoing fecal microbiota transplantation: a descriptive phenomenological study

Abstract Background Interstitial cystitis is a chronic bladder condition of unknown cause that severely impacts patients’ quality of life and mental health. Current treatments show limited effectiveness, highlighting the need for alternative approaches. Fecal microbiota transplantation (FMT), an emerging therapy aimed at restoring gut microbiota balance, has demonstrated efficacy in various conditions and has been preliminarily applied to interstitial cystitis. Research indicates gut dysbiosis in interstitial cystitis patients, suggesting a gut-bladder axis involvement. However, its clinical efficacy in IC/BPS remains uncertain, and patients’ experiences during hospitalization for FMT remain underexplored. This study aims to explore the hospitalization experiences of patients with interstitial cystitis undergoing their first fecal microbiota transplantation, providing insights for improving clinical care and support. Methods A descriptive phenomenological qualitative study was conducted. The study was conducted between May and August 2024 at a tertiary hospital in eastern China. A purposive sampling method was used to recruit 15 patients with interstitial cystitis who had undergone their first fecal microbiota transplantation at the hospital’s Microecology Therapy Center. These patients participated in face-to-face semi-structured interviews. Results Three main themes and eight sub-themes were identified. (1) Concerns and doubts, included the following subthemes: “Concerns about FMT treatment,” “Hospitalization costs,” and “Lack of support”; (2) Confusion and uncertainty, comprised subthemes such as “Lifestyle management,” and “Lack of information”; (3) Trust and acceptance, encompassed subthemes like “Expectations and acceptance of new treatment,” “Healthcare team services,” and “Treatment experience and initial outcomes.” Conclusions This study identified three major aspects of the hospitalization experiences of patients with interstitial cystitis undergoing their first fecal microbiota transplantation. Initially, patients were concerned about the treatment, its cost, and lack of support. During treatment, they felt confused about managing daily routines and lacked sufficient treatment information. As treatment progressed, they gradually developed trust in the procedure and medical staff. Reporting method The study was reported following the Consolidated Criteria for Reporting Qualitative Research Checklist. Trial registration This qualitative study was conducted within a clinical trial registered with the Chinese Clinical Trial Registry (ChiCTR2100048970) on July 19, 2021.