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

Abstract

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.

Centering Group Treatment for Women With Interstitial Cystitis/Bladder Pain Syndrome: A Qualitative Analysis

“…Both groups of patients also noted that they are open to options that are self-efficacious, such as complementary and alternative medicine, meditation, and dietary changes, something that upholds prior work indicating that women with ICBPS want nontraditional treatments 6,9 and structured treatment regimens that involve self-care practices 24 . In addition, both Centering and non-Centering participants noted how much isolation and loneliness are felt in the experience of ICBPS 3,25 . Patients have expressed in prior studies that loneliness and isolation are part of ICBPS, and patients with ICBPS want their health care providers to aid them with the psychosocial fallout of ICBPS 3 .…”

“…24 In addition, both Centering and non-Centering participants noted how much isolation and loneliness are felt in the experience of ICBPS. 3,25 Patients have expressed in prior studies that loneliness and isolation are part of ICBPS, and patients with ICBPS want their health care providers to aid them with the psychosocial fallout of ICBPS. 3 Centering participants specifically noted how the support and sense of community they felt in Centering alleviated this, indicating that Centering is the first treatment with evidence supporting that is specifically addressing this aspect of the disease.…”

Urologic Chronic Pelvic Pain Syndrome Flares: A Comprehensive, Systematic Review and Meta-Analysis of the Peer-Reviewed Flare Literature

“…These studies included an older mixedmethods study of IC/BPS participants, 8 as well as several more recent qualitative and mixed-methods studies of mainly IC/BPS participants. [9][10][11][12][13][14][15][16] The most commonly used term by participants in the older study was "attack," 8 whereas the most commonly used term in more recent studies was "flare" or derivations thereof. [9][10][11][12][13][14][15][16] Additional terms mentioned were "bad," "bad bladder," or "stay-in-bed" days; "episodes," "pelvic floor episodes," "incidents," "exacerbation," and "inflammation."…”

“…[9][10][11][12][13][14][15][16] The most commonly used term by participants in the older study was "attack," 8 whereas the most commonly used term in more recent studies was "flare" or derivations thereof. [9][10][11][12][13][14][15][16] Additional terms mentioned were "bad," "bad bladder," or "stay-in-bed" days; "episodes," "pelvic floor episodes," "incidents," "exacerbation," and "inflammation." 9,[11][12][13] Participants also subdivided their flares into "minor" or "moderate" flares vs "major" flares and other similar terms.…”

“…[9][10][11][12][13][14][15][16] Additional terms mentioned were "bad," "bad bladder," or "stay-in-bed" days; "episodes," "pelvic floor episodes," "incidents," "exacerbation," and "inflammation." 9,[11][12][13] Participants also subdivided their flares into "minor" or "moderate" flares vs "major" flares and other similar terms. 9,13,15 Manifestation Twenty-one articles provided information on flare manifestation, 8,9,12,13,[17][18][19][20][21][22][23][24][25][26][27][28][29][30][31][32][33] although only 6 documented participants' experiences prospectively over time.…”