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    Urological chronic pelvic pain syndrome symptom flares: characterisation of the full range of flares at two sites in the Multidisciplinary Approach to the Study of Chronic Pelvic Pain (MAPP) Research Network.
    BJU Int 2014 Dec 11;114(6):916-25. Epub 2014 Aug 11.
    Division of Public Health Sciences, Department of Surgery, Washington University School of Medicine, St. Louis, MO, USA; Alvin J. Siteman Cancer Center, Department of Surgery, Washington University School of Medicine, St. Louis, MO, USA.
    Objectives: To describe the full range of symptom exacerbations defined by people with interstitial cystitis/bladder pain syndrome and chronic prostatitis/chronic pelvic pain syndrome as 'flares', and to investigate their associated healthcare utilization and bother at two sites of the Multidisciplinary Approach to the Study of Chronic Pelvic Pain (MAPP) Epidemiology and Phenotyping study.

    Subjects And Methods: Participants completed a flare survey that asked them: 1) whether they had ever had flares ('symptoms that are much worse than usual') that lasted <1 h, >1 h and <1 day, and >1 day; and 2) for each duration of flare, to report: their average length and frequency; their typical levels of urological and pelvic pain symptoms; and their levels of healthcare utilization and bother. We compared participants' responses to their non-flare MAPP values and by duration of flare using generalized linear mixed models.

    Results: Of 85 participants, 76 (89.4%) completed the flare survey, 72 (94.7%) of whom reported experiencing flares. Flares varied widely in terms of their duration (seconds to months), frequency (several times per day to once per year or less), and intensity and type of symptoms (e.g. pelvic pain vs urological symptoms). Flares of all durations were associated with greater pelvic pain, urological symptoms, disruption to participants' activities and bother, with increasing severity of each of these factors as the duration of flares increased. Days-long flares were also associated with greater healthcare utilization. In addition to duration, symptoms (pelvic pain, in particular) were also significant determinants of flare-related bother.

    Conclusions: Our findings suggest that flares are common and associated with greater symptoms, healthcare utilization, disruption and bother. Our findings also show the characteristics of flares most bothersome to patients (i.e. increased pelvic pain and duration), and thus of greatest importance to consider in future research on flare prevention and treatment.

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    Neurourol Urodyn 2015 Feb 23;34(2):188-95. Epub 2013 Nov 23.
    Division of Public Health Sciences, Department of Surgery, Washington University School of Medicine, St. Louis, Missouri; Alvin J. Siteman Cancer Center, Department of Surgery, Washington University School of Medicine, St. Louis, Missouri.
    Aims: To provide the first description and quantification of symptom changes during interstitial cystitis/bladder pain syndrome and chronic prostatitis/chronic pelvic pain syndrome symptom exacerbations ("flares").

    Methods: Participants at one site of the Trans-Multidisciplinary Approaches to the study of chronic Pelvic Pain Epidemiology and Phenotyping Study completed two 10-day diaries over the 1-year study follow-up period, one at baseline and one during their first flare (if not at baseline). On each day of the diary, participants reported whether they were currently experiencing a flare, defined as "symptoms that are much worse than usual" for at least 1 day, and their levels of urination-related pain, pelvic pain, urgency, and frequency on a scale of 0-10. Read More
    Urological chronic pelvic pain syndrome flares and their impact: qualitative analysis in the MAPP network.
    Int Urogynecol J 2015 Jul 20;26(7):1047-60. Epub 2015 Mar 20.
    Division of Public Health Sciences and the Alvin J. Siteman Cancer Center, Department of Surgery, Washington University School of Medicine, 660 S. Euclid Avenue, Box 8100, St. Louis, MO, 63110, USA,
    Introduction And Hypothesis: Although in-depth qualitative information is critical to understanding patients' symptom experiences and to developing patient-centered outcome measures, only one previous qualitative study has assessed urological chronic pelvic pain syndrome (UCPPS) symptom exacerbations ("flares").

    Methods: We conducted eight focus groups of female UCPPS (interstitial cystitis/bladder pain syndrome) patients at four sites from the MAPP Research Network (n = 57, mean = 7/group) to explore the full spectrum of flares and their impact on patients' lives.

    Results: Flare experiences were common and varied widely in terms of UCPPS symptoms involved, concurrent nonpelvic symptoms (e. Read More
    Painful Bladder Filling and Painful Urgency are Distinct Characteristics in Men and Women with Urological Chronic Pelvic Pain Syndromes: A MAPP Research Network Study.
    J Urol 2015 Dec 17;194(6):1634-41. Epub 2015 Jul 17.
    Department of Biostatistics and Epidemiology, University of Pennsylvania Perelman School of Medicine, Philadelphia, Pennsylvania.
    Purpose: We describe bladder associated symptoms in patients with urological chronic pelvic pain syndromes. We correlated these symptoms with urological, nonurological, psychosocial and quality of life measures.

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    The MAPP research network: design, patient characterization and operations.
    BMC Urol 2014 Aug 1;14:58. Epub 2014 Aug 1.
    Department of Urology, Division of Neurourology and Pelvic Reconstructive Surgery, University of Michigan, Ann Arbor, MI, USA.
    Background: The "Multidisciplinary Approach to the Study of Chronic Pelvic Pain" (MAPP) Research Network was established by the NIDDK to better understand the pathophysiology of urologic chronic pelvic pain syndromes (UCPPS), to inform future clinical trials and improve clinical care. The evolution, organization, and scientific scope of the MAPP Research Network, and the unique approach of the network's central study and common data elements are described.

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