Urology · 2024
Interstitial Cystitis Chatter: A Qualitative Evaluation of Bladder Instillation Online.
СтатьяНазвание и аннотация: Перевод в очереди
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Wong Ryan, Licari Leslie Claire, Bologna Eugenio, Adelstein Sarah
Аннотация
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.
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.