The Effect of a Diagnosis on Patients With Interstitial Cystitis/Bladder Pain Syndrome: A Qualitative Approach.

Female Pelvic Medicine & Reconstructive Surgery
Katherine A VolpeAvita K Pahwa

Abstract

Interstitial cystitis/bladder pain syndrome (IC/BPS) is a chronic pain condition that significantly affects patient quality of life. We investigated whether receiving a formal medical diagnosis of IC/BPS was perceived by patients to improve symptoms and disease-specific quality of life. Participants with self-reported IC/BPS completed publicly available online surveys. Surveys included demographic information, validated questionnaires, and a free-text response. Participants were asked to comment on the utility of obtaining a diagnosis. Investigators coded the responses and analyzed the results using grounded theory methodology. Six hundred seventy-three participants who responded to the free-text were analyzed. The mean age of respondents was 52 years, with an average of 10 years since IC/BPS diagnosis. The IC/BPS pain syndrome diagnosis had wide ranging effects on both symptoms and coping. These effects were often mediated by improvements in perceived control and empowerment after diagnosis. Although most participants noted benefit after diagnosis of IC/BPS, some reported harmful effects ranging from stigmatization by providers to desperation when told that there was not a cure. A formal medical diagnosis of IC/BPS has a signi...Continue Reading

References

Jan 22, 2000·BMJ : British Medical Journal·C PopeN Mays
Mar 20, 2003·Qualitative Health Research·Gillian KingLisa Havens
Nov 29, 2007·Scandinavian Journal of Primary Health Care·Merete Undeland, Kirsti Malterud
May 2, 2019·The Journal of Urology·Jennifer AngerToby C Chai

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