Featured Publications
Brain predicted age in chronic pelvic pain: A study by the Multidisciplinary Approach to the Study of Chronic Pelvic Pain (MAPP) Research Network
Format: Research Paper
Authors: Kristan A Leech; Sarah A Kettlety; Wendy J Mack; Karl Kreder; Andrew Schrepf; Jason J Kutch
Accepted: PAIN
Abstract
Abstract
[coming soon]
Ecological Momentary Assessment of Pelvic Pain and Urinary Urgency Variability in Urologic Chronic Pelvic Pain Syndrome and Their Association with Illness Impact and Quality of Life: Findings from the Multidisciplinary Approach to the Study of Chronic Pelvic Pain Symptom Patterns Study.
Erickson BA, Griffith JW, Wensheng G, Mengying Y, Herman T, Bradley CS, Quentin Clemens J, Farrar JT, Gupta P, Kreder KJ, Henry Lai H, Naliboff BD, Newman DK, Rodriguez LV, Spitznagle T, Sutcliffe S, Sutherland SE, Taple BJ, Richard Landis J. Neurourol Urodyn. 2024 Apr;43(4):893-901. doi: 10.1002/nau.25363. Epub 2024 Jan 22. [PMID: 38247366] [PMC11031348]
Abstract
Purpose: This study tested the hypothesis that ecological momentary assessment (EMA) of pelvic pain (PP) and urinary urgency (UU) would reveal unique Urologic Chronic Pelvic Pain Syndrome (UCPPS) phenotypes that would be associated with disease specific quality of life (QOL) and illness impact metrics (IIM).
Materials and methods: A previously validated smart phone app (M-app) was provided to willing Multidisciplinary Approach to the Study of Chronic Pelvic Pain (MAPP) participants. M-app notifications were sent 4-times daily for 14 days inquiring about PP and UU severity. A clustering algorithm that accounted for variance placed participants into PP and UU variability? clusters. Associations between clusters and QOL and IIM were then determined.
Results: A total of 204 participants enrolled in the M-app study (64% female). M-app compliance was high (median 63% of surveys). Cluster analysis revealed k = 3 (high, low, none) PP clusters and k = 2 (high, low) UU clusters. When adjusting for baseline pain severity, high PP variability, but not UU variability, was strongly associated with QOL and IIM; specifically worse mood, worse sleep and higher anxiety. UU and PP clusters were associated with each other (p < 0.0001), but a large percentage (33%) of patients with high PP variability had low UU variability.
Conclusions: PP variability is an independent predictor of worse QOL and more severe IIM in UCPPS participants after controlling for baseline pain severity and UU. These findings suggest alternative pain indices, such as pain variability and unpredictability, may be useful adjuncts to traditional measures of worst and average pain when assessing UCPPS treatment responses.
Keywords: ecological momentary assessment; illness impact; phone application; quality of life; urologic chronic pelvic pain syndrome; variability.
© 2024 The Authors. Neurourology and Urodynamics published by Wiley Periodicals LLC.
Urologic Chronic Pelvic Pain Syndrome Flares: A Comprehensive, Systematic Review and Meta-Analysis of the Peer-Reviewed Flare Literature.
Barker ES, Chiu K, Brown VL, Morsy H, Yaeger LH, Catna A, Pakpahan R, Moldwin R, Shorter B, Lowder JL, Lai HH, Sutcliffe S. J Urol. 2024 Mar;211(3):341-353. doi: 10.1097/JU.0000000000003820. Epub 2023 Dec 18. [PMID: 38109700 Review] [PMC11037930]
Abstract
Purpose: We sought to systematically review and summarize the peer-reviewed literature on urologic chronic pelvic pain syndrome flares, including their terminology, manifestation, perceived triggers, management and prevention strategies, impact on quality of life, and insights into pathophysiologic mechanisms, as a foundation for future empirical research.
Materials and methods: We searched 6 medical databases for articles related to any aspect of symptom exacerbations for interstitial cystitis/bladder pain syndrome and chronic prostatitis/chronic pelvic pain syndrome. A total of 1486 abstracts and 398 full-text articles were reviewed, and data were extracted by at least 2 individuals.
Results: Overall, we identified 59 articles, including 36 qualitative, cross-sectional, or case-control; 15 cohort-based; and 8 experimental articles. The majority of studies described North American patients with confirmed diagnoses. "Flare" was a commonly used term, but additional terminology (eg, exacerbation) was also used. Most flares involved significant increases in pain intensity, but less data were available on flare frequency and duration. Painful, frequent, long-lasting, and unpredictable flares were highly impactful, even over and above participants' nonflare symptoms. A large number of perceived triggers (eg, diet, stress) and management/prevention strategies (eg, analgesics, thermal therapy, rest) were proposed by participants, but few had empirical support. In addition, few studies explored underlying biologic mechanisms.
Conclusions: Overall, we found that flares are painful and impactful, but otherwise poorly understood in terms of manifestation (frequency and duration), triggers, treatment, prevention, and pathophysiology. These summary findings provide a foundation for future flare-related research and highlight gaps that warrant additional empirical studies.
Keywords: bladder pain syndrome; chronic pelvic pain syndrome; chronic prostatitis; interstitial cystitis; symptom exacerbation.
Validation of a simple body map to measure widespread pain in urologic chronic pelvic pain syndrome: A MAPP research network study.
Clemens JQ, Locke K Jr, Landis JR, Kreder K, Rodriguez LV, Yang CC, Tu FF, Harte SE, Schrepf A, Farrar JT, Sutcliffe S, Naliboff BD, Williams DA, Afari N, Spitznagle T, Taple BJ, Lai HH; Multidisciplinary Approach to the Study of Chronic Pelvic Pain (MAPP) Research Network. Neurourol Urodyn. 2024 Mar;43(3):727-737. doi: 10.1002/nau.25400. Epub 2024 Jan 25. [PMID: 38270336] [PMC10981467]
Abstract
Purpose: In patients with urologic chronic pelvic pain syndrome (UCPPS), the presence of widespread pain appears to identify a distinct phenotype, with a different symptom trajectory and potentially different response to treatment than patients with pelvic pain only.
Materials and methods: A 76-site body map was administered four times, at weekly intervals, to 568 male and female UCPPS participants in the MAPP Network protocol. The 76 sites were classified into 13 regions (1 pelvic region and 12 nonpelvic regions). The degree of widespread pain was scored from 0 to 12 based on the number of reported nonpelvic pain regions. This continuous body map score was regressed over other measures of widespread pain, with UCPPS symptom severity, and with psychosocial variables to measure level of association. These models were repeated using an updated body map score (0-12) that incorporated a threshold of pain ≥ 4 at each site.
Results: Body map scores showed limited variability over the 4 weekly assessments, indicating that a single baseline assessment was sufficient. The widespread pain score correlated highly with other measures of widespread pain and correlated with worsened UCPPS symptom severity and psychosocial functioning. Incorporating a pain severity threshold ≥4 resulted in only marginal increases in these correlations.
Conclusions: These results support the use of this 13-region body map in the baseline clinical assessment of UCPPS patients. It provides reliable data about the presence of widespread pain and does not require measurement of pain severity, making it relatively simple to use for clinical purposes.
Keywords: chronic prostatitis/chronic pelvic pain syndrome; interstitial cystitis/bladder pain syndrome; pelvic pain; prostate; urinary bladder.
© 2024 The Authors. Neurourology and Urodynamics published by Wiley Periodicals LLC.
Believing Women: A Qualitative Exploration of Provider Disbelief and Pain Dismissal among Women with Interstitial Cystitis/Bladder Pain Syndrome from the MAPP Research Network
Brown VL, James A, Hunleth J, Bradley CS, Farrar JT, Gupta P, Lai HH, Lowder JL, Moldwin R, Rodriguez LV, Yang CC, Sutcliffe S. Int Urogynecol J. 2024 Jan;35(1):139-148. doi: 10.1007/s00192-023-05677-0. Epub 2023 Nov 22. [PMID: 37991567] [PMC11019919]
Abstract
Introduction and hypothesis: Although allusions to the importance of a good physician-patient relationship are present throughout the interstitial cystitis/bladder pain syndrome (IC/BPS) literature, qualitative analysis of patients' perspectives on the clinical encounter is lacking, particularly among women who are most commonly affected by IC/BPS. Therefore, we adopted a patient-centered experiential approach to understanding female patients' perception of clinical encounters.
Methods: We re-analyzed previously collected data from a qualitative study on patient flare experiences including eight focus groups of female IC/BPS patients (n = 57, mean = 7/group). Qualitative analysis applied grounded theory to index all physician-patient interactions, then thematically coded these interactions to elucidate common experiences of clinical encounters.
Results: Women with IC/BPS shared common experiences of provider disbelief and pain dismissal. Discussions with participants demonstrated the extent to which these negative encounters shape patients' health care-seeking behavior, outlook, and psychosocial well-being. Appearing in more than one guise, provider disbelief and dismissal occurred as tacit insinuations, explicit statements, silence, oversimplification, and an unwillingness to listen and discuss alternative treatment. As a result, women adopted several strategies including: rotating specialists; "testing" physicians; self-advocacy; self-management; avoiding the stigma of chronic pain; crying; and opting for alternative medicine over biomedicine.
Conclusions: The prevalence of provider disbelief and pain dismissal among women with IC/BPS indicates a need to improve physician-patient communication, informed by the struggles, anxieties, and gendered inequities that female patients with chronic pain experience in their diagnostic journey. Results suggest that further investigation into the power dynamics of clinical encounters might be required.
Keywords: Chronic pain; Delayed diagnosis; Interstitial cystitis; Patient–provider encounter; Qualitative; Women.
© 2023. The International Urogynecological Association.
