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International Urogynecology Journal

, Volume 26, Issue 7, pp 1047–1060 | Cite as

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

  • Siobhan SutcliffeEmail author
  • 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
Original Article

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.

Keywords

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

Notes

Acknowledgements

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.

Funding

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).

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Copyright information

© The International Urogynecological Association 2015

Authors and Affiliations

  • Siobhan Sutcliffe
    • 1
    Email author
  • Catherine S. Bradley
    • 2
    • 3
    • 4
  • James Quentin Clemens
    • 5
  • Aimee S. James
    • 1
  • Katy S. Konkle
    • 5
  • Karl J. Kreder
    • 4
  • Hing Hung Henry Lai
    • 6
  • Sean C. Mackey
    • 7
    • 8
  • Cody P. Ashe-McNalley
    • 9
  • Larissa V. Rodriguez
    • 10
  • Edward Barrell
    • 11
  • Xiaoling Hou
    • 11
  • Nancy A. Robinson
    • 11
  • Chris Mullins
    • 12
  • Sandra H. Berry
    • 13
  1. 1.Division of Public Health Sciences and the Alvin J. Siteman Cancer Center, Department of SurgeryWashington University School of MedicineSt. LouisUSA
  2. 2.Department of Obstetrics and Gynecology, College of MedicineUniversity of IowaIowa CityUSA
  3. 3.Department of Epidemiology, College of Public HealthUniversity of IowaIowa CityUSA
  4. 4.Department of Urology, College of MedicineUniversity of IowaIowa CityUSA
  5. 5.Division of Neurology and Pelvic Reconstructive Surgery, Department of UrologyThe University of Michigan Medical CenterAnn ArborUSA
  6. 6.Division of Urologic Surgery, Department of SurgeryWashington University School of MedicineSt. LouisUSA
  7. 7.Division of Pain Medicine, Department of Anesthesiology, Perioperative and Pain MedicineStanford University School of MedicinePalo AltoUSA
  8. 8.Department of Neuroscience and NeurologyStanford University School of MedicinePalo AltoUSA
  9. 9.Center for Neurobiology of Stress, David Geffen School of MedicineUniversity of California - Los AngelesLos AngelesUSA
  10. 10.Institute of UrologyUniversity of Southern CaliforniaBeverly HillsUSA
  11. 11.Department of Biostatistics and EpidemiologyUniversity of Pennsylvania Perelman School of MedicinePhiladelphiaUSA
  12. 12.National Institute of Diabetes and Digestive and Kidney Diseases, National Institutes of HealthBethesdaUSA
  13. 13.Rand CorporationSanta MonicaUSA

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