Introduction Interstitial cystitis/bladder pain syndrome (IC/BPS) is a poorly understood source of chronic pain causing significant morbidity, with variable treatment success. Despite the need to understand patient perspectives in chronic pain, there is a paucity of qualitative data for IC/BPS. We aimed to acquire information regarding patient experience with IC/BPS symptoms and with their medical care to elicit suggestions to improve patient satisfaction with that care. Methods Fifteen women with IC/PBS participated in a total of four focus groups. Sessions were recorded, transcribed, and information was de-identified. Focus groups were conducted until thematic saturation was reached. All transcripts were coded and analyzed by a minimum of 3 independent physician reviewers. Investigators identified emergent themes and concepts using grounded theory methodology. Results Participant’s mean age was 52.6 years with an average IC/BPS duration of 6.3 years. Thematic saturation was reached after 4 focus groups. We identified three emergent patient experience concepts; IC/PBS is debilitating, the disease course is unpredictable and unrelenting, and patients experience significant isolation. Importantly, suicidal ideation was expressed in each group. Patients voiced strong preference for physicians who provided education regarding the condition, an array of treatment options, presented organized treatment plans and offered optimism and hope regarding treatment outcomes. Conclusions Our study presents novel findings of the importance of patient-physician interaction in IC/BPS and reinforces the tremendous disability and burden of this disease, which frequently manifests in suicidal ideation. Patients preferred organized treatment plans with diverse choices, and providers who offered hope in dealing with their condition.
Objective The aim of the study was to compare the racial/ethnic representation in studies supporting the 2019 American Urological Association/Society of Urodynamics, Female Pelvic Medicine and Urogenital Reconstruction overactive bladder diagnosis and treatment guideline to the racial/ethnic distribution of the U.S. population. Methods We analyzed the race and ethnicity of participants in the articles cited in the 2019 American Urological Association/Society of Urodynamics, Female Pelvic Medicine and Urogenital Reconstruction nonneurogenic overactive bladder guidelines. The primary outcome was the representation quotient, the ratio of the proportion of a racial/ethnic group in the guideline studies relative to the estimated proportion of that group in the U.S. population. Data were analyzed using descriptive statistics and Pearson χ2 test. Results There were 387 studies included, 35% of which reported participants’ race. Of the studies that included U.S. participants, 111 (61%) reported race and 44 (24%) reported Hispanic ethnicity. The representation quotient for White and Asian participants was 1.06 and 1.62, indicating overrepresentation relative to the U.S. population, respectively. The representation quotient for Black, Hispanic, and American Indian/Alaska Native participants was 0.85, 0.56, and 0.02, respectively, indicating underrepresentation for these groups. Evaluation of the representation quotients over time revealed no meaningful change in representation from 1990 to 2019 for any racial/ethnic group. Conclusions The evidence based on the overactive bladder guidelines is derived from studies that frequently failed to report race/ethnicity and is not reflective of the U.S. population. Black, Hispanic, and American Indian/Alaska Native participants that are underrepresented in U.S.-based studies, highlighting the need for more inclusive recruitment strategies in overactive bladder research.
Background Physicians and hospital systems often have relationships with biomedical manufacturers to develop new ideas, products, and further education. Because this relationship can influence medical research and practice, reporting disclosures is necessary to reveal any potential bias and inform consumers. The Sunshine Act was created to develop a new reporting system of these financial relationships called the Open Payments database. Currently, all disclosures submitted with research to scientific meetings are at the discretion of the physician. We hypothesized that financial relationships between authors and medical industry are underreported. Objectives We aimed to describe concordance between physicians’ financial disclosures listed in the abstract book from the 41st Annual Society of Gynecologic Surgeons’ (SGS) Scientific Meeting to physician payments reported to the Center for Medicaid and Medicare Services’ (CMS) Open Payments database for the same year. Study Design Authors and scientific committee members responsible for the content of the 41st SGS Scientific Meeting were identified from the published abstract book; each abstract listed disclosures for each author. Abstract disclosures were compared to transactions recorded on the CMS Open Payments database for concordance. Two authors reviewed each non-disclosed CMS listing to determine relatedness between the company listed on CMS and abstract content. Results Abstracts and disclosures of 335 physicians meeting inclusion criteria were reviewed. 209/335 (62%) physicians had transactions reported in CMS which totaled $1.99 million. 24/335 (7%) physicians listed companies with their abstracts; 5 of those 24 physicians were concordant with CMS. The total amount of all non-disclosed transactions was $1.3 million. Transactions reported in CMS associated with a single physician ranged from $11.72 to $405,903.36. Of the 209 physicians with CMS transactions that were not disclosed, the majority (68%) had at least one company listed in CMS that was determined after review to be related to the subject of their abstract. Conclusion Voluntary disclosure of financial relationships was poor, and the majority of unlisted disclosures in the abstract book were companies related to the scientific content of the abstract. Better transparency is needed by physicians responsible for the content presented at gynecologic scientific meetings.
Increasing birthweight increases the risk of BPI among births with shoulder dystocia, independent of advanced maternal age, race, parity, gestational diabetes, or operative vaginal delivery.
Introduction Interstitial cystitis/bladder pain syndrome (IC/BPS) is a chronic pain condition that significantly affects patient quality of life. We investigated whether receiving a formal medical diagnosis of IC/BPS was perceived by patients to improve symptoms and disease-specific quality of life. Methods Participants with self-reported IC/BPS completed publicly available online surveys. Surveys included demographic information, validated questionnaires, and a free-text response. Participants were asked to comment on the utility of obtaining a diagnosis. Investigators coded the responses and analyzed the results using grounded theory methodology. Results Six hundred seventy-three participants who responded to the free-text were analyzed. The mean age of respondents was 52 years, with an average of 10 years since IC/BPS diagnosis. The IC/BPS pain syndrome diagnosis had wide ranging effects on both symptoms and coping. These effects were often mediated by improvements in perceived control and empowerment after diagnosis. Although most participants noted benefit after diagnosis of IC/BPS, some reported harmful effects ranging from stigmatization by providers to desperation when told that there was not a cure. Conclusions A formal medical diagnosis of IC/BPS has a significant effect on patients who experience the condition. Although diagnosis usually improves symptoms and coping, a universal experience was not described by all IC/BPS patients. Given that most patients report improvement, more work is needed to expedite diagnosis. In addition, we must better understand factors associated with lack of symptom and quality of life improvement after an IC/BPS diagnosis has been made by medical providers.
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