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

Abstract

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.

Keywords: bladder pain syndrome; chronic pelvic pain syndrome; chronic prostatitis; flare; interstitial cystitis; symptom exacerbation.

Figure 1

Distribution of flare duration by sex among 76 participants with interstitial cystitis/bladder pain syndrome and/or chronic prostatitis/chronic pelvic pain syndrome, Washington University School of Medicine and the University of Alabama at Birmingham 2010-2013 The four circles of each diagram represent participants who reported never having experienced a flare (“no flares”) or participants who reported having experienced one of the following durations of flares (“minutes-long flares”: less than an hour long; “hours to 1-day-long flares”: more than an hour but less than a day long; or “multiple days-long flares”: more than a day long). The size of each circle is proportional to the percentage of participants who reported no flares or each duration of flare, and the number written within the circle indicates this percentage. Where the circles overlap indicates where participants reported more than one duration of flare. For instance, 9.2% of all participants reported minutes-long flares only; 2.6% of participants reported both minutes-long and hours to 1-day-long flares, but not multiple-days long flares; and 25.0% of participants reported flares of all three durations. The total percentage of participants who reported each duration of flare is presented in the legend. For instance, 36.8% of participants (the sum of 9.2, 2.6, and 25.0%) reported minutes-long flares.