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”).
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.
Flare 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.
Given 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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We thank the research coordinators at each focus group site (Mary Eno, Vivien Gardner, Megan Halvorson, Nuwanthi Heendeniya, Ginny Leone, Ratna Pakpahan, and Suzanne Smith) for recruiting participants and coordinating the focus groups; Sam Silver for re-coding the focus group transcripts; and, most importantly, the participants for their participation.
This study was funded by MAPP Research Network grants NIH DK082370, DK082344, DK082345, DK082315, and DK082316.
Conflicts of interest
None of the authors has any financial arrangements that might represent a conflict of interest with the present study. KJK is a consultant for Symptelligence, Medtronic, and Tengion (not related to the present study).
An example of the moderator’s guide is shown in Table 7
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Sutcliffe, S., Bradley, C.S., Clemens, J.Q. et al. Urological chronic pelvic pain syndrome flares and their impact: qualitative analysis in the MAPP network. Int Urogynecol J 26, 1047–1060 (2015). https://doi.org/10.1007/s00192-015-2652-6