Urological chronic pelvic pain syndrome flares and their impact: qualitative analysis in the MAPP network

Abstract

Introduction Although in-depth qualitative information is critical for understanding patients’ symptom experiences and for developing patient-centered outcome measures, only one previous qualitative study has assessed urologic chronic pelvic pain syndrome (UCPPS) symptom exacerbations (“flares”). Methods We conducted eight focus groups of female UCPPS (interstitial cystitis/bladder pain syndrome) patients at four sites of the MAPP Research Network (n=57, mean=7/group) to explore the full spectrum of flares and their impact on patients’ lives. Results Flare experiences were common and varied widely in terms of UCPPS symptoms involved, concurrent non-pelvic 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, days-long flares. 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 loss of employment or limited career or educational advancement. Emergent themes included the need for a sense of control over unpredictable symptoms and reduced social engagement. Conclusions 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.

Important role of physicians in addressing psychological aspects of interstitial cystitis/bladder pain syndrome (IC/BPS): a qualitative analysis

“…Past work has described how disruptive flares are, causing patients to miss works, school, or request disability, all of which result in reduced social engagement [19]. This is consistent with our identified emergent theme of isolation.…”

“…Fear of unexpected occurrence of pain in any chronic pain condition can be debilitating. A qualitative study by Sutcliffe et al [19] noted that the unpredictability of flares can be extremely detrimental, often discouraging patients from carrying out day-to-day activities and planning for long-term goals. We also found that the unpredictable nature of this disease with regard to short-term and long-term outcomes is a major patient concern, including potential for disease progression.…”

“…Focus groups are used to gather information and it is known that interaction between patients with the same condition facilitates discussion, revealing underlying issues or themes[21]. Focus groups have characterized flares in women with IC/BPS [19,20], but have not addressed patient satisfaction with care or patient-provider relationships. The purpose of this study was to gain further understanding of IC/BPS from a patient centered perspective based on grounded theory [21].…”

Inflammation and Symptom Change in Interstitial Cystitis or Bladder Pain Syndrome: A Multidisciplinary Approach to the Study of Chronic Pelvic Pain Research Network Study

“…2 Another recent longitudinal investigation found that 62% of IC/BPS sufferers experienced symptom persistence during at least three of four time points when assessed every three months over a one year period. 3 However, to date, no biomarkers have been identified that are associated with the course of the syndrome or with short term exacerbation of symptoms, termed “symptom flares.” 4 …”

Correlates of Health Care Seeking Activities in Patients with Urological Chronic Pelvic Pain Syndromes: Findings from the MAPP Cohort

“…However, no association between symptom variability and HCS was observed. It is possible that our biweekly measurements were too infrequent to accurately capture UCPPS symptom variability, as focus group studies have indicated that UCPPS symptoms can fluctuate throughout the day 18 . We are currently developing a process to gather symptom data on a daily basis using mobile smart-phone platforms to further investigate this issue.…”