Objectives-The case definition of interstitial cystitis (IC) is in flux. The International Continence Society (ICS) suggested a definition for the painful bladder syndrome (PBS), a concept embraced by many IC investigators, some of whom have used the name IC/PBS. In a study of recent onset IC/ PBS patients, we had two objectives: to determine 1) what proportion met the ICS definition and 2) how did those who met the definition differ from those who did not.Methods-Having recruited women who had recent onset IC/PBS for an ongoing case control study to identify its risk factors, we studied our first 138 eligible cases to identify those who met the ICS definition. We then compared those who met the definition to those who did not by variables acquired through interviews and medical records. The most liberal interpretation of the ICS definition did not include 47/138 (34%) of our cases. Comparing these to the 91 (66%) who did meet the ICS criteria, we found that 96/97 clinical variables, including many generally thought characteristic of IC/PBS, were not significantly different between the 2 groups. Results-The
Suprapubic prominence and changes in the voiding cycle are features consistent with but do not prove that the bladder is the pain generator in interstitial cystitis/painful bladder syndrome and the pain sites described by patients are referred from it. The patients with interstitial cystitis/painful bladder syndrome who might have been diagnosed with vulvodynia or urethral syndrome did not differ from others in important patient variables.
Objective-Interstitial cystitis/painful bladder syndrome (IC/PBS) at present is a symptom-based diagnosis. The Interstitial Cystitis Symptom Index (ICSI), also known as the O'Leary-Sant Symptom Index, is a widely used scale that assesses the 4 cardinal symptoms of IC/PBS, i.e. bladder pain, urgency, frequency, and nocturia, by asking how often each is experienced. In an ongoing case control study of recent onset IC/PBS, we compared the ICSI to questions that addressed severity of these symptoms.Methods-Recruiting nationally, we enrolled women with IC/PBS symptoms of ≤12 months. We assessed severity of pain, frequency, and urgency by Likert and categorical scales, and how often these symptoms were experienced by the ICSI. We compared these scales by frequency distributions and inter-scale correlations.Results-In 138 women with recent onset IC/PBS, scores for frequency were correlated and for pain appeared to be complementary. However for urgency, the ICSI question of "the strong need to urinate with little or no warning" consistently yielded lower scores than the severity question of "the compelling urge to urinate which is difficult to postpone". Indeed, some patients denied urgency to the ICSI question yet reported intense urgency to the severity question.Conclusions-Compared to the severity question, the ICSI underestimated the prevalence and degree of urgency. This observation is consistent with the views of others that sudden urgency does not define the sensation experienced by many IC/PBS patients. Clarifying this symptom description may assist in developing a usable case definition for IC/PBS.
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