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Believing women: a qualitative exploration of provider disbelief and pain dismissal among women with interstitial cystitis/bladder pain syndrome from the MAPP research network

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International Urogynecology Journal Aims and scope Submit manuscript

Abstract

Introduction and hypothesis

Although allusions to the importance of a good physician–patient relationship are present throughout the interstitial cystitis/bladder pain syndrome (IC/BPS) literature, qualitative analysis of patients’ perspectives on the clinical encounter is lacking, particularly among women who are most commonly affected by IC/BPS. Therefore, we adopted a patient-centered experiential approach to understanding female patients’ perception of clinical encounters.

Methods

We re-analyzed previously collected data from a qualitative study on patient flare experiences including eight focus groups of female IC/BPS patients (n = 57, mean = 7/group). Qualitative analysis applied grounded theory to index all physician–patient interactions, then thematically coded these interactions to elucidate common experiences of clinical encounters.

Results

Women with IC/BPS shared common experiences of provider disbelief and pain dismissal. Discussions with participants demonstrated the extent to which these negative encounters shape patients’ health care-seeking behavior, outlook, and psychosocial well-being. Appearing in more than one guise, provider disbelief and dismissal occurred as tacit insinuations, explicit statements, silence, oversimplification, and an unwillingness to listen and discuss alternative treatment. As a result, women adopted several strategies including: rotating specialists; “testing” physicians; self-advocacy; self-management; avoiding the stigma of chronic pain; crying; and opting for alternative medicine over biomedicine.

Conclusions

The prevalence of provider disbelief and pain dismissal among women with IC/BPS indicates a need to improve physician–patient communication, informed by the struggles, anxieties, and gendered inequities that female patients with chronic pain experience in their diagnostic journey. Results suggest that further investigation into the power dynamics of clinical encounters might be required.

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Data Availability

Our research team views managing, preserving, and sharing data with professional colleagues, other institutions, and the public as one of the key responsibilities of public health and anthropological research. The data are not publicly available because the minimal data set for this study contains identifying patient-level data that cannot be suitably de-identified or aggregated. Proposals for access to this data should be directed to Dr. Siobhan Sutcliffe, sutcliffes@wustl.edu. To gain access, data requestors will need to sign a data access agreement.

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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; and the participants for their participation. This study was funded by MAPP Research Network grants, NIH DK082370, DK082344, DK082345, DK082315, and DK082316; as well as T32DK120497.

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Authors and Affiliations

  1. Division of Public Health Sciences, Department of Surgery, Washington University School of Medicine, St. Louis, MO, USA

    Victoria L. Brown, Aimee James, Jean Hunleth, Jerry L. Lowder & Siobhan Sutcliffe

  2. Division of Female Pelvic Medicine and Reconstructive Surgery, Department of Obstetrics and Gynecology, Washington University School of Medicine, St. Louis, MO, USA

    Victoria L. Brown, Jerry L. Lowder & Siobhan Sutcliffe

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

    Catherine S. Bradley

  4. Center for Clinical Epidemiology and Biostatistics, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA

    John T. Farrar

  5. Department of Urology, University of Michigan, Ann Arbor, MI, USA

    Priyanka Gupta

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

    H. Henry Lai

  7. The Arthur Smith Institute for Urology, Zucker School of Medicine at Hofstra-Northwell, Lake Success, NY, USA

    Robert Moldwin

  8. Department of Urology, Weill Cornell Medicine, New York, NY, USA

    Larissa V. Rodriguez

  9. Department of Urology, University of Washington, Seattle, WA, USA

    Claire C. Yang

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  1. Victoria L. Brown
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  2. Aimee James
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  12. Siobhan Sutcliffe
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Contributions

V.L. Brown: analysis conceptualization, data analysis, manuscript writing; A. James: study conceptualization, manuscript editing; J. Hunleth: manuscript editing; C.S. Bradley: study conceptualization, data collection, manuscript editing; J.T. Farrar: manuscript editing; P. Gupta: manuscript editing; H.H. Lai: study conceptualization, data collection, manuscript editing; J.L. Lowder: manuscript editing; R. Moldwin: manuscript editing; L.V. Rodriguez: study conceptualization, data collection, manuscript editing; C.C. Yang: manuscript editing; S. Sutcliffe: study conceptualization, data collection, analysis conceptualization, manuscript editing.

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Correspondence to Victoria L. Brown.

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Brown, V.L., James, A., Hunleth, J. et al. Believing women: a qualitative exploration of provider disbelief and pain dismissal among women with interstitial cystitis/bladder pain syndrome from the MAPP research network. Int Urogynecol J 35, 139–148 (2024). https://doi.org/10.1007/s00192-023-05677-0

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