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

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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.

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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).

Author information

Authors and Affiliations

  1. Division of Public Health Sciences and the Alvin J. Siteman Cancer Center, Department of Surgery, Washington University School of Medicine, 660 S. Euclid Avenue, Box 8100, St. Louis, MO, 63110, USA

    Siobhan Sutcliffe & Aimee S. James

  2. Department of Obstetrics and Gynecology, College of Medicine, University of Iowa, Iowa City, IA, USA

    Catherine S. Bradley

  3. Department of Epidemiology, College of Public Health, University of Iowa, Iowa City, IA, USA

    Catherine S. Bradley

  4. Department of Urology, College of Medicine, University of Iowa, Iowa City, IA, USA

    Catherine S. Bradley & Karl J. Kreder

  5. Division of Neurology and Pelvic Reconstructive Surgery, Department of Urology, The University of Michigan Medical Center, Ann Arbor, MI, USA

    James Quentin Clemens & Katy S. Konkle

  6. Division of Urologic Surgery, Department of Surgery, Washington University School of Medicine, St. Louis, MO, USA

    Hing Hung Henry Lai

  7. Division of Pain Medicine, Department of Anesthesiology, Perioperative and Pain Medicine, Stanford University School of Medicine, Palo Alto, CA, USA

    Sean C. Mackey

  8. Department of Neuroscience and Neurology, Stanford University School of Medicine, Palo Alto, CA, USA

    Sean C. Mackey

  9. Center for Neurobiology of Stress, David Geffen School of Medicine, University of California - Los Angeles, Los Angeles, CA, USA

    Cody P. Ashe-McNalley

  10. Institute of Urology, University of Southern California, Beverly Hills, CA, USA

    Larissa V. Rodriguez

  11. Department of Biostatistics and Epidemiology, University of Pennsylvania Perelman School of Medicine, Philadelphia, PA, USA

    Edward Barrell, Xiaoling Hou & Nancy A. Robinson

  12. National Institute of Diabetes and Digestive and Kidney Diseases, National Institutes of Health, Bethesda, MD, USA

    Chris Mullins

  13. Rand Corporation, Santa Monica, CA, USA

    Sandra H. Berry

Authors
  1. Siobhan Sutcliffe
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  2. Catherine S. Bradley
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  3. James Quentin Clemens
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  4. Aimee S. James
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  5. Katy S. Konkle
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  6. Karl J. Kreder
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  7. Hing Hung Henry Lai
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  8. Sean C. Mackey
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  9. Cody P. Ashe-McNalley
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  10. Larissa V. Rodriguez
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  11. Edward Barrell
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  12. Xiaoling Hou
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  13. Nancy A. Robinson
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  14. Chris Mullins
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  15. Sandra H. Berry
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Corresponding author

Correspondence to Siobhan Sutcliffe.

Appendix

Appendix

An example of the moderator’s guide is shown in Table 7

Table 7 UCPPS symptom variability focus group discussion outline, MAPP Research Network
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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

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  • DOI: https://doi.org/10.1007/s00192-015-2652-6

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