Development of a patient‐centered text message‐based platform for the self‐management of interstitial cystitis/bladder pain syndrome symptoms

Abstract

Objective: To develop a patient-centered text message-based platform that promotes self-management of symptoms of interstitial cystitis/bladder pain syndrome (IC/BPS).Methods: Adult women with IC/BPS interested in initiating a first-or secondline treatments per American Urological Association guidelines (recategorized as "behavioral/non-pharmacologic treatments" and "oral medicines" in the 2022 version) participated in rapid cycle innovation consisting of iterative cycles of contextual inquiry, prototype design and development. We delivered treatment modules and supportive messages using an algorithm-driven interactive messaging prototype through a HIPAA-compliant texting platform.Patients provided feedback through narrative text messages and an exit interview. Feedback was analyzed qualitatively and used to iteratively revise the platform until engagement ≥ 85% and accuracy ≥ 80% were achieved. The final version consisted of four treatment module categories (patient education and behavioral modification, cognitive behavioral therapy, pelvic floor physical therapy, and guided mindfulness practices) and supportive messages delivered through an automated algorithm over 6 weeks.Results: Thirty IC/BPS patients with moderate symptom bother (median IC Problem Index score 9, range 6−12) participated in five cycles of contextual inquiry. Qualitative analysis identified three overarching concepts that informed the development of the platform: preference for patient centered terms, desire to gain self-efficacy in managing symptoms, and need for provider support. Patients preferred the term "interstitial cystitis" to "bladder pain syndrome" which carried the stigma of chronic pain. Patients reported greater self-efficacy in managing symptoms through improved access to

Urologic Chronic Pelvic Pain Syndrome Flares: A Comprehensive, Systematic Review and Meta-Analysis of the Peer-Reviewed Flare Literature

“…Finally, in studies that assessed participants’ preferences for flare treatment, many mentioned the importance of a structured flare plan, particularly one including self-management. 9,11,32,45 Participants in 1 study also mentioned being more open to taking UCPPS medications during flares than at other times. 32…”

“…Thirteen articles presented data on the impact of flares on participants' QOL, including 10 qualitative/mixedmethods and 3 cross-sectional analyses. [9][10][11][12][13][14][15][16]24,27,32,33,45 During flares, participants reported a wide range of impactdfrom difficulty concentrating, irritability, anxiety, drowsiness from pain medications, difficulty sleeping, and cancelling social plans to leaving/ staying home from work or school, staying in bed or close to a toilet, going to the emergency room, and feeling depressed and occasionally suicidal. [9][10][11][12][13][14][15]27,45 The degree of impact tended to be related to the intensity, duration, frequency, and unpredictability of symptoms, particularly pain.…”

“…[9][10][11][12][13][14][15][16]24,27,32,33,45 During flares, participants reported a wide range of impactdfrom difficulty concentrating, irritability, anxiety, drowsiness from pain medications, difficulty sleeping, and cancelling social plans to leaving/ staying home from work or school, staying in bed or close to a toilet, going to the emergency room, and feeling depressed and occasionally suicidal. [9][10][11][12][13][14][15]27,45 The degree of impact tended to be related to the intensity, duration, frequency, and unpredictability of symptoms, particularly pain. 9,13,24,33 Findings for flare frequency persisted in 1 study after adjustment for average pain intensity, suggesting that flares negatively impact participants' lives over and above typical pain intensity.…”

Potential of AI-Driven Chatbots in Urology: Revolutionizing Patient Care Through Artificial Intelligence

“…The NLP chatbot integrated into MenGO enhances the overall user experience by facilitating communication and reducing barriers in seeking appropriate healthcare. Kim et al [ 22 ] developed a patient-centered text message-based platform to promote self-management of symptoms associated with interstitial cystitis/bladder pain syndrome (IC/BPS). The platform consisted of four treatment module categories, namely, patient education and behavioral modification, cognitive-behavioral therapy, pelvic floor physical therapy, and guided mindfulness practices.…”

A Bibliometric Analysis of Urologic Chronic Pelvic Pain Syndrome From 2000 to 2022

“…Patients can self-manage a certain amount of their symptoms by changing behaviors, which includes their diet, fluid management and stress management. 41 Corresponding timely and supportive information can effectively improve the effectiveness of patient self-management, 42 suggesting that clinical workers need to pay more attention to patient feedback.…”