Ryan Wong, Leslie Claire Licari, Eugenio Bologna, Sarah Adelstein
{"title":"Interstitial Cystitis Chatter: A Qualitative Evaluation of Bladder Instillation Online.","authors":"Ryan Wong, Leslie Claire Licari, Eugenio Bologna, Sarah Adelstein","doi":"10.1016/j.urology.2024.10.051","DOIUrl":null,"url":null,"abstract":"<p><strong>Objective: </strong>To qualitatively assess the perception and experiences of bladder instillation for interstitial cystitis among women on Reddit, a widely used anonymous social media platform.</p><p><strong>Methods: </strong>\"r/interstitialcystitis,\" a Subreddit with >27,000 subscribers, was queried for bladder instillation among women with interstitial cystitis in November 2023. Posts were analyzed qualitatively by 3 independent researchers. Grounded theory principles were applied to derive preliminary themes. These themes were then used to develop emergent themes.</p><p><strong>Results: </strong>Sixty-three posts with 637 responses published between 2022-2023 were analyzed. Qualitative analysis yielded 4 themes: (1) IC/BPS anxiety and depression, (2) limited treatment options for IC/BPS pain, (3) exhausting all IC/BPS treatment options before bladder instillation, (4) bladder instillation ineffectiveness for IC/BPS pain. Three emergent concepts were derived: (1) a prevailing sense of desperation for relief among women with IC/BPS, (2) women are fearful and apprehensive about bladder instillation, (3) a perception of bladder instillation as the final recourse for women suffering from IC/BPS.</p><p><strong>Conclusion: </strong>This study represents the first evaluation of bladder instillation as a therapeutic from a social media community focused exclusively on IC/BPS. These results capture patient's experiences with nonurological associated syndromes and indicate a role for physicians to address mental health concerns in patients with IC/BPS, in addition to opportunities to improve patient education on bladder instillations.</p>","PeriodicalId":23415,"journal":{"name":"Urology","volume":" ","pages":"23-27"},"PeriodicalIF":2.1000,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Urology","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1016/j.urology.2024.10.051","RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"2024/10/22 0:00:00","PubModel":"Epub","JCR":"Q2","JCRName":"UROLOGY & NEPHROLOGY","Score":null,"Total":0}
引用次数: 0
Abstract
Objective: To qualitatively assess the perception and experiences of bladder instillation for interstitial cystitis among women on Reddit, a widely used anonymous social media platform.
Methods: "r/interstitialcystitis," a Subreddit with >27,000 subscribers, was queried for bladder instillation among women with interstitial cystitis in November 2023. Posts were analyzed qualitatively by 3 independent researchers. Grounded theory principles were applied to derive preliminary themes. These themes were then used to develop emergent themes.
Results: Sixty-three posts with 637 responses published between 2022-2023 were analyzed. Qualitative analysis yielded 4 themes: (1) IC/BPS anxiety and depression, (2) limited treatment options for IC/BPS pain, (3) exhausting all IC/BPS treatment options before bladder instillation, (4) bladder instillation ineffectiveness for IC/BPS pain. Three emergent concepts were derived: (1) a prevailing sense of desperation for relief among women with IC/BPS, (2) women are fearful and apprehensive about bladder instillation, (3) a perception of bladder instillation as the final recourse for women suffering from IC/BPS.
Conclusion: This study represents the first evaluation of bladder instillation as a therapeutic from a social media community focused exclusively on IC/BPS. These results capture patient's experiences with nonurological associated syndromes and indicate a role for physicians to address mental health concerns in patients with IC/BPS, in addition to opportunities to improve patient education on bladder instillations.
期刊介绍：
Urology is a monthly, peer–reviewed journal primarily for urologists, residents, interns, nephrologists, and other specialists interested in urology
The mission of Urology®, the "Gold Journal," is to provide practical, timely, and relevant clinical and basic science information to physicians and researchers practicing the art of urology worldwide. Urology® publishes original articles relating to adult and pediatric clinical urology as well as to clinical and basic science research. Topics in Urology® include pediatrics, surgical oncology, radiology, pathology, erectile dysfunction, infertility, incontinence, transplantation, endourology, andrology, female urology, reconstructive surgery, and medical oncology, as well as relevant basic science issues. Special features include rapid communication of important timely issues, surgeon''s workshops, interesting case reports, surgical techniques, clinical and basic science review articles, guest editorials, letters to the editor, book reviews, and historical articles in urology.
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