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

Siobhan Sutcliffe, Catherine S. Bradley, James Quentin Clemens, Aimee S. James, Katy S. Konkle, Karl J. Kreder, Hing Hung Henry Lai, Sean C. Mackey, Cody P. Ashe-McNalley, Larissa V. Rodriguez, Edward Barrell, Xiaoling Hou, Nancy A. Robinson, Chris Mullins, Sandra H. Berry

Research output: Contribution to journalArticlepeer-review

25 Scopus citations

Abstract

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”). Methods: 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. Results: 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. 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.

Original languageEnglish
Pages (from-to)1047-1060
Number of pages14
JournalInternational urogynecology journal and pelvic floor dysfunction
Volume26
Issue number7
DOIs
StatePublished - Jul 1 2015

Keywords

  • Bladder pain syndrome
  • Flare
  • Focus group
  • Interstitial cystitis
  • Symptom exacerbation
  • Urological chronic pelvic pain syndrome

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