Long-Term Symptom Trajectories in Urologic Chronic Pelvic Pain Syndrome: A MAPP Research Network Study



      To characterize Urologic Chronic Pelvic Pain Syndrome (UCPPS) pain and urinary symptom trajectories with up to 9 years of follow-up and evaluate whether initial 1-year trajectories are associated with longer-term changes.

      Materials and Methods

      Data were analyzed from the Multidisciplinary Approach to the Study of Chronic Pelvic Pain (MAPP) Network's prospective observational protocols including the Epidemiology and Phenotyping Study (EPS; baseline to Year 1), EPS Extension (EXT; Years 1-5), and Symptom Patterns Study (SPS: 3-year study; Years 3-9). Adults with Interstitial Cystitis/Bladder Pain Syndrome or Chronic Prostatitis/Chronic Pelvic Pain Syndrome provided patient-reported assessments biweekly (EPS), every 4 months (EXT), or quarterly (SPS). Primary outcomes were composite pain (0-28) and urinary (0-25) severity scores. Multi-phase mixed effects models estimated outcomes over time, adjusted for baseline severity and stratified by EPS symptom trajectory.


      163 participants (52% women; mean ± SD age 46.4 ± 16.1 years) completed EPS and enrolled in EXT; 67 also enrolled in SPS. Median follow-up was 4.6 years (range 1.3-9.0). After 1 year: 27.6%, 44.8% and 27.6% and 27.0%, 38.0% and 35.0% were improved, stable or worse in pain and urinary symptom severity, respectively. On average, pain and urinary symptom scores did not change further during EXT and SPS periods.


      Women and men with UCPPS showed remarkable stability in pain and urinary symptom severity for up to 9 years, irrespective of their initial symptom trajectory, suggesting UCPPS is a chronic condition with stable symptoms over multiple years of follow-up.


      CPPS (Chronic Prostatitis/Chronic Pelvic Pain Syndrome), EPS (Epidemiology and Phenotyping Study), EXT (EPS Extension Study), GUPI (Genitourinary Pain Index), IC/BPS (Interstitial Cystitis/Bladder Pain Syndrome), ICDB (Interstitial Cystitis Database), ICSI (Interstitial Cystitis Symptom Index), IQR (interquartile range), MAPP (Multidisciplinary Approach to the Study of Chronic Pelvic Pain), PPS (Pelvic Pain Severity), QOL (Quality of Life), SPS (Symptom Patterns Study), SD (Standard deviation), UCPPS (Urologic Chronic Pelvic Pain Syndrome), USS (Urinary Symptom Severity)
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