Abstract
Introduction
Interstitial cystitis/bladder pain syndrome (IC/BPS) is a poorly understood source of chronic pain causing significant morbidity, with variable treatment success. Despite the need to understand patient perspectives in chronic pain, there is a paucity of qualitative data for IC/BPS. We aimed to acquire information regarding patient experience with IC/BPS symptoms and with their medical care to elicit suggestions to improve patient satisfaction with that care.
Methods
Fifteen women with IC/PBS participated in a total of four focus groups. Sessions were recorded and transcribed and information deidentified. Focus groups were conducted until thematic saturation was reached. All transcripts were coded and analyzed by a minimum of three independent physician reviewers. Investigators identified emergent themes and concepts using grounded-theory methodology.
Results
Participant’s mean age was 52.6 years, with an average IC/BPS duration of 6.3 years. Thematic saturation was reached after four focus groups. We identified three emergent patient experience concepts: IC/PBS is debilitating, the disease course is unpredictable and unrelenting, and patients experience significant isolation. Importantly, suicidal ideation was expressed in each group. Patients voiced strong preference for physicians who provided education regarding the condition, an array of treatment options, organized treatment plans, and optimism and hope regarding treatment outcomes.
Conclusions
Our study presents novel findings of the importance of patient–physician interaction in IC/BPS and reinforces the tremendous disability and burden of this disease, which frequently manifests in suicidal ideation. Patients preferred organized treatment plans with diverse choices and providers who offered hope in dealing with their condition.
Similar content being viewed by others
References
Hanno PM, Erickson D, Moldwin R, Faraday MM. Diagnosis and treatment of interstitial cystitis/bladder pain syndrome: AUA guideline amendment. J Urol. 2015;193(5):1545–53. doi:10.1016/j.juro.2015.01.086.
Clemens JQ, Meenan RT, O’Keeffe Rosetti MC, Brown SO, Gao SY, Calhoun EA. Prevalence of interstitial cystitis symptoms in a managed care population. J Urol. 2005;174(2):576–80.
Clemens JQ, Markossian T, Calhoun EA. Comparison of economic impact of chronic prostatitis/chronic pelvic pain syndrome and interstitial cystitis/painful bladder syndrome. Urology. 2009;73(4):743–6. doi:10.1016/j.urology.2008.11.007.
Hepner KA, Watkins KE, Elliott MN, Clemens JQ, Hilton LG, Berry SH. Suicidal ideation among patients with bladder pain syndrome/interstitial cystitis. Urology. 2012;80(2):280–5. doi:10.1016/j.urology.2011.12.053.
Keller JJ, Liu SP, Lin HC. Increased risk of depressive disorder following diagnosis with bladder pain syndrome/interstitial cystitis. Neurourol Urodyn. 2013;32(5):467–71. doi:10.1002/nau.22316.
Rabin C, O’Leary A, Neighbors C, Whitmore K. Pain and depression experienced by women with interstitial cystitis. Women Health. 2000;31(4):67–81.
Webster DC, Brennan T. Self-care effectiveness and health outcomes in women with interstitial cystitis: implications for mental health clinicians. Issues Ment Health Nurs. 1998;19(5):495–519.
Dyer AJ, Twiss CO. Painful bladder syndrome: an update and review of current management strategies. Curr Urol Rep. 2014;15(2):384. doi:10.1007/s11934-013-0384-z.
Mullins C, Bavendam T, Kirkali Z, Kusek JW. Novel research approaches for interstitial cystitis/bladder pain syndrome: thinking beyond the bladder. Transl Androl Urol. 2015;4(5):524–33. doi:10.3978/j.issn.2223-4683.2015.08.01.
Tripp DA, Nickel JC, Wong J, Pontari M, Moldwin R, Mayer R, et al. Mapping of pain phenotypes in female patients with bladder pain syndrome/interstitial cystitis and controls. Eur Urol. 2012;62(6):1188–94. doi:10.1016/j.eururo.2012.05.023.
Hanno PM, Burks DA, Clemens JQ, Dmochowski RR, Erickson D, Fitzgerald MP, et al. AUA guideline for the diagnosis and treatment of interstitial cystitis/bladder pain syndrome. J Urol. 2011;185(6):2162–70. doi:10.1016/j.juro.2011.03.064.
Verheul W, Sanders A, Bensing J. The effects of physicians’ affect-oriented communication style and raising expectations on analogue patients’ anxiety, affect and expectancies. Patient Educ Couns. 2010;80(3):300–6. doi:10.1016/j.pec.2010.06.017.
Hsiao-Wei Lo G, Balasubramanyam AS, Barbo A, Street Jr RL, Suarez-Almazor ME. Mediated by self-efficacy status, positive clinician conveyed expectations of treatment effect reduces pain in knee osteoarthritis. Arthritis Care Res. 2015. doi:10.1002/acr.22775.
Williams S, Weinman J, Dale J. Doctor-patient communication and patient satisfaction: a review. Fam Pract. 1998;15(5):480–92.
Vowles KE, Thompson M. The patient-provider relationship in chronic pain. Curr Pain Headache Rep. 2012;16(2):133–8. doi:10.1007/s11916-012-0244-4.
Anger JT, Nissim HA, Le TX, Smith AL, Lee U, Sarkisian C, et al. Women’s experience with severe overactive bladder symptoms and treatment: insight revealed from patient focus groups. Neurourol Urodyn. 2011;30(7):1295–9. doi:10.1002/nau.21004.
Smith AL, Nissim HA, Le TX, Khan A, Maliski SL, Litwin MS, et al. Misconceptions and miscommunication among aging women with overactive bladder symptoms. Urology. 2011;77(1):55–9. doi:10.1016/j.urology.2010.07.460.
Anger JT, Le TX, Nissim HA, Rogo-Gupta L, Rashid R, Behniwal A, et al. How dry is “OAB-dry”? Perspectives from patients and physician experts. J Urol. 2012;188(5):1811–5. doi:10.1016/j.juro.2012.07.044.
Sutcliffe S, Bradley CS, Clemens JQ, James AS, Konkle KS, Kreder KJ, et al. Urological chronic pelvic pain syndrome flares and their impact: qualitative analysis in the MAPP network. Int Urogynecol J. 2015;26(7):1047–60. doi:10.1007/s00192-015-2652-6.
Webster DC, Brennan T. Self-care strategies used for acute attack of interstitial cystitis. Urol Nurs. 1995;15(3):86–93.
Glaser BS, AL. The discovery of grounded theory: strategies for qualitative research. Aldine Transaction, New Brunswick, US. (2012).
Pope C, Ziebland S, Mays N. Analysing qualitative data. BMJ. 2000;320:114–6.
Maykut PM, R. (1994). Qualitative Research; A philosophic and practical guide. The Falmer Press, London, Washington, DC.
Chuang YC, Weng SF, Hsu YW, Huang CL, Wu MP. Increased risks of healthcare-seeking behaviors of anxiety, depression and insomnia among patients with bladder pain syndrome/interstitial cystitis: a nationwide population-based study. Int Urol Nephrol. 2015. doi:10.1007/s11255-014-0908-6.
Administration, SS. (2015). Social Security Ruling, SSR 15–1p; Titles II and XVI: Evaluating Cases Involving Interstitial Cystitis (IC). vol 80 Federal Register.
Tripp DA, Nickel JC, Fitzgerald MP, Mayer R, Stechyson N, Hsieh A. Sexual functioning, catastrophizing, depression, and pain, as predictors of quality of life in women with interstitial cystitis/painful bladder syndrome. Urology. 2009;73(5):987–92. doi:10.1016/j.urology.2008.11.049.
Verbeek J, Sengers MJ, Riemens L, Haafkens J. Patient expectations of treatment for back pain: a systematic review of qualitative and quantitative studies. Spine. 2004;29(20):2309–18.
Lutgendorf SK, Kreder KJ, Rothrock NE, Ratliff TL, Zimmerman B. A laboratory stress model for examining stress and symptomatology in interstitial cystitis patients. Urology. 2001;57(6 Suppl 1):122.
Rothrock NE, Lutgendorf SK, Kreder KJ, Ratliff T, Zimmerman B. Stress and symptoms in patients with interstitial cystitis: a life stress model. Urology. 2001;57(3):422–7.
O’Hare 3rd PG, Hoffmann AR, Allen P, Gordon B, Salin L, Whitmore K. Interstitial cystitis patients’ use and rating of complementary and alternative medicine therapies. Int Urogynecol J. 2013;24(6):977–82. doi:10.1007/s00192-012-1966-x.
Kanter G, Komesu YM, Qaedan F, Jeppson PC, Dunivan GC, Cichowski SB, et al. Mindfulness-based stress reduction as a novel treatment for interstitial cystitis/bladder pain syndrome: a randomized controlled trial. Int Urogynecol J. 2016. doi:10.1007/s00192-016-3022-8.
Cohen DJ, Crabtree BF. Evaluative criteria for qualitative research in health care: controversies and recommendations. Ann Fam Med. 2008;6(4):331–9. doi:10.1370/afm.818.
Acknowledgments
Thanks to Ambroshia Murrieta and Heidi Rishel Brakey for their excellent work moderating focus groups and providing input on the focus group script.
Author information
Authors and Affiliations
Corresponding author
Ethics declarations
Funding
This project was supported (in part or in full) by the National Center for Research Resources and the National Center for Advancing Translational Sciences of the National Institutes of Health through Grant Number UL1 TR001449. The content is solely the responsibility of the authors and does not necessarily represent the official views of the NIH.
Conflicts of interest
G. Kanter: Travel support from Medtronic for educational course
KA Volpe: None
GC Dunivan: Research support from Pelvalon, Inc.
SB Cichowski: None
PC Jeppson: None
RG Rogers: DSMB Chair for the TRANSFORM trial sponsored by American Medical Systems, UptoDate royalties, Royalties from McGraw Hill for a textbook
Y Komesu: None
Rights and permissions
About this article
Cite this article
Kanter, G., Volpe, K.A., Dunivan, G.C. et al. Important role of physicians in addressing psychological aspects of interstitial cystitis/bladder pain syndrome (IC/BPS): a qualitative analysis. Int Urogynecol J 28, 249–256 (2017). https://doi.org/10.1007/s00192-016-3109-2
Received:
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s00192-016-3109-2