Introduction 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. Methods 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. Results 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. Conclusions A formal medical diagnosis of IC/BPS has a significant effect on patients who experience the condition. Although diagnosis usually improves symptoms and coping, a universal experience was not described by all IC/BPS patients. Given that most patients report improvement, more work is needed to expedite diagnosis. In addition, we must better understand factors associated with lack of symptom and quality of life improvement after an IC/BPS diagnosis has been made by medical providers.
INTRODUCTION: Interstitial cystitis/bladder pain syndrome (IC/BPS) is an underdiagnosed chronic pain syndrome that often causes profound detrimental effects on quality of life. We sought to investigate whether obtaining a diagnosis of IC/BPS makes a significant impact on patients' symptom course and coping. METHODS: Participants with self-reported IC/BPS completed publicly available online surveys from October 2017-January 2018. Surveys included demographic information, validated questionnaires and free-text response on the utility of obtaining a diagnosis. Researchers coded and analyzed the comments using Dedoose Version 7.0.23 and Grounded Theory methodology. RESULTS: 1052 participants completed the survey and 673 answered the free-text response. The median age was 53 (interquartile range [IQR] 41, 64) with an average of 7 years (IQR 3, 14) since IC/BPS diagnosis. Two categories were identified in the participants' responses:1) effects of the diagnosis on daily life and 2) effects of the diagnosis on medical care. Within each category, both positive and negative experiences were noted. Effects on daily life included emotional response to diagnosis (hope vs. desperation) and impacts on everyday activities (social support vs. financial burden of treatment). Effects on medical care included IC/BPS-specific treatment (appropriate referrals vs. no improvement despite different treatments) and changes to provider interactions (validation vs. stigmatization). The majority of participants noted emotional benefit and improved treatment with diagnosis. However, some participants reported detrimental effects. CONCLUSION: IC/BPS diagnosis has a significant physical and emotional effect on patients' experiences of their symptoms. Validating patients' experiences may help to minimize possible negative effects of diagnosis.
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