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.

Objectives To describe the full spectrum of symptom exacerbations defined by interstitial cystitis/bladder pain syndrome and chronic prostatitis/chronic pelvic pain syndrome patients as flares, and to investigate their associated health-care utilization and bother at two sites of the Trans-Multidisciplinary Approaches to the Study of Chronic Pelvic Pain (Trans-MAPP) Epidemiology and Phenotyping study. Patients 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 hr and 1 day; and 2) for each duration of flare, to report their: a) average length and frequency; b) typical levels of urologic and pelvic pain symptoms; and c) levels of health-care utilization and bother. We compared participants' responses to their non-flare Trans-MAPP values and across flares using generalized linear mixed models. Results Seventy six of 85 participants (89.4%) completed the flare survey, 72 of whom reported having flares (94.7%). 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 versus urologic symptoms). Flares of all duration were associated with greater pelvic pain, urologic 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 health-care 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, health-care utilization, disruption, and bother. Our findings also inform 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. Introduction Interstitial cystitis/bladder pain syndrome (IC/BPS) and chronic prostatitis/chronic pelvic pain syndrome (CP/CPPS) are chronic, debilitating syndromes characterized by bladder and/or pelvic pain, and irritative urologic symptoms, such as urinary urgency and frequency. Although the natural history of these urologic chronic pelvic pain syndromes (UCPPSs) is widely believed to include symptom exacerbations (frequently referred to as “flares” or “flare-ups” [1-6]), very few studies have described these flares. In our previous small, longitudinal study designed to quantify symptom changes during flares, particularly those lasting >1 day [7], we found unexpectedly that some participants reported flares lasting only a few minutes. As we are not aware of any references to flares of this short duration in the published literature – only flares lasting at least a few hours to several days or weeks have been referenced [1, 8, 9] – we conducted an exploratory study at two sites of the ongoing Trans-Multidisciplinary Approaches to the Study of Chronic Pelvic Pain (MAPP) Epidemiology and Phenotyping (EP) study to examine the full spectrum of UCPPS flares, and to determine which of these flares warrant further study based on their associated health-care utilization and, more importantly, degree of bother to participants. This type of descriptive information that draws upon patient experiences is critical to inform future studies of flare prevention, treatment, and management.