• Siobhan Sutcliffe, Catherine S Bradley, Clemens James Quentin JQ, Aimee S James, Katy S Konkle, Karl J Kreder, Lai Hing Hung Henry HH, Sean C Mackey, Cody P Ashe-McNalley, Larissa V Rodriguez, Edward Barrell, Xiaoling Hou, Nancy A Robinson, Chris Mullins, and Sandra H Berry.
• 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, sutcliffes@wudosis.wustl.edu.
• Int Urogynecol J. 2015 Jul 1; 26 (7): 1047-60.

Introduction And HypothesisAlthough 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").MethodsWe 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.ResultsFlare experiences were common and varied widely in terms of UCPPS symptoms involved, concurrent nonpelvic symptoms (e.g., diarrhea), symptom intensity (mild to severe), duration (minutes to years), and frequency (daily to < once/year), although the most commonly described flares were painful flares lasting days. These latter flares were also most disruptive to participants' lives, causing some to cancel social events, miss work or school, and in the worst cases, go to the emergency room or on disability leave. Participants also reported a longer-term impact of flares, including negative effects on their sexual functioning and marital, family, and social relationships; and the loss of employment or limited career or educational advancement. Emerging themes included the need for a sense of control over unpredictable symptoms and reduced social engagement.ConclusionsGiven their negative impact, future research should focus on approaches to prevent flares, and to reduce their frequency, severity, and/or duration. Patients' quality of life may also be improved by providing them with a sense of control over their symptoms through ready access to flare medications/therapy, and by engaging them socially.

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