Symptom Variability and its Impact among Female Interstitial Cystitis/Bladder Pain Syndrome Patients in the MAPP Network: An In-Depth Qualitative Analysis

Sutcliffe S, Bradley CS, Clemens JQ, James AS, Konkle K, Lai HH, Rodriguez L, Berry SH. Symptom Variability and its Impact among Female Interstitial Cystitis/Bladder Pain Syndrome Patients in the MAPP Network: An In-Depth Qualitative Analysis. Poster session presented at: American Urological Association Annual Meeting; 2014 May 17; Orlando, FL.

Introduction and Objectives Although in-depth qualitative information is critical for understanding symptom variability and its impact, no previous qualitative studies have described interstitial cystitis/bladder pain syndrome (IC/BPS) symptom variability, particularly symptom exacerbations referred to commonly as "flares". Methods We conducted a series of eight focus groups of female IC/BPS patients at four sites of the Multidisciplinary Approaches to the study of chronic Pelvic Pain (MAPP) research network to describe the full spectrum of flares and to explore their impact on patients' quality of life. Each focus group consisted of a 1.5 hour discussion moderated by the same female moderator. Focus groups were recorded, transcribed verbatim, and coded by one rater with a comprehensive set of 122 descriptive codes using Atlas-ti. A 20% sample of quotes was re-coded by a separate rater with high reproducibility (mean kappa = 0.91). Results 57 female IC/BPS patients participated in the focus groups (mean = 7/group), almost all of whom reported symptom exacerbations. Most participants referred to these exacerbations as "flares" or derivations thereof, whereas a smaller proportion used phrases such as "bad bladder days." Reported flares varied widely in terms of symptoms (pelvic pain, urgency, frequency, and concurrent extra-pelvic pain, irritable bowel symptoms, etc); symptom intensity ("dull pressure" to "so painful that I want to die"); duration (minutes to one year) and frequency (daily to rarely), although the most commonly described flares were painful, days-long flares. The impact of flares also varied widely. Some participants reported no major short-term impact during flares, whereas others reported major disruption to their work and other activities. Some participants also described longer-term impact, including loss of employment or limited career advancement; reduced travel and social activities, and negative effects on their sexual functioning and marital , family, and social relationships. Conclusions Our findings suggest a wide spectrum of flare experiences and major immediate and long-term impact of flares. Future research should focus on ways in which to prevent and treat this bothersome aspect of IC/BPS.