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Flares and their impact among male urologic chronic pelvic pain syndrome patients: An in-depth qualitative analysis in the Multidisciplinary Approach to the Study of Chronic Pelvic Pain (MAPP) Research Network
Journal article   Open access   Peer reviewed

Flares and their impact among male urologic chronic pelvic pain syndrome patients: An in-depth qualitative analysis in the Multidisciplinary Approach to the Study of Chronic Pelvic Pain (MAPP) Research Network

Susanne A. Quallich, J. Quentin Clemens, Carrie Ronstrom, Aimee S. James, Karl J. Kreder, H. Henry Lai, Bruce D. Naliboff, Larissa Rodriguez, Sandra H. Berry and Siobhan Sutcliffe
Neurourology and urodynamics, Vol.41(6), pp.1468-1481
08/2022
DOI: 10.1002/nau.24983
PMCID: PMC11033701
PMID: 35686553
url
https://www.ncbi.nlm.nih.gov/pmc/articles/11033701View
Open Access

Abstract

Introduction There has been a sparse exploration of the lived experience of men with urologic chronic pelvic pain syndrome (UCPPS), and none with the goal of Investigating the experience of "flares" as part of this chronic pain syndrome in men. Methods We conducted three focus groups of male UCPPS patients at two sites of the MAPP Research Network (n = 16 total participants) to explore the full spectrum of flares and their impact on men's lives. Results Flare experiences were common and specific symptom components varied widely. Men reported nonpelvic symptoms (e.g., diarrhea), and variability in symptom intensity (mild to severe), duration (minutes to days), and frequency of flares. Flares episodes, and the threat of flares, were disruptive to their lives, social roles, and relationships. Distinct long-term impacts were reported, such as decreased sexual activity, decreased travel, and potential loss of employment or career. The themes included social isolation and the need for a sense of control and understanding over their unpredictable symptoms. Conclusions Given their negative impact, future research with men and UCPPS should focus on approaches to prevent flares, and should consider a multimodal approach to reducing the frequency, severity, and/or duration. Quality of life may be improved by providing men with a sense of control over their symptoms and offering them multimodal treatment options, consistent with the recommendations for further research for women with UCPPS.
Life Sciences & Biomedicine Science & Technology Urology & Nephrology

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