Symptom Variability and Early Symptom Regression in the MAPP Study: A Prospective Study of Urological Chronic Pelvic Pain Syndrome

Alisa J. Stephens-Shields*, J. Quentin Clemens, Thomas Jemielita, John Farrar, Siobhan Sutcliffe, Xiaoling Hou, J. Richard Landis, J. Quentin Clemens, Philip Hanno, Ziya Kirkali, John W. Kusek, J. Richard Landis, M. Scott Lucia, Robert M. Moldwin, Chris Mullins, Michel A. Pontari, David J. Klumpp, Anthony J. Schaeffer, Apkar (Vania) Apkarian, David CellaMelissa A. Farmer, Colleen Fitzgerald, Richard Gershon, James W. Griffith, Charles J. Heckman, Mingchen Jiang, Laurie Keefer, Darlene S. Marko, Jean Michniewicz, Todd Parrish, Frank Tu, Emeran A. Mayer, Larissa V. Rodríguez, Jeffry Alger, Cody P. Ashe-McNalley, Ben Ellingson, Nuwanthi Heendeniya, Lisa Kilpatrick, Cara Kulbacki, Jason Kutch, Jennifer S. Labus, Bruce D. Naliboff, Fornessa Randal, Suzanne R. Smith, Karl J. Kreder, Catherine S. Bradley, Mary Eno, Kris Greiner, Yi Luo, Susan K. Lutgendorf, MAPP Research Network, MAPP Research Network

*Corresponding author for this work

Research output: Contribution to journalArticle

13 Scopus citations

Abstract

Purpose We examined symptom variability in men and women with urological chronic pelvic pain syndrome. We describe symptom fluctuations as related to early symptom regression and its effect on estimated 1-year symptom change. We also describe a method to quantify patient specific symptom variability. Materials and Methods Symptoms were assessed biweekly in 424 subjects with urological chronic pelvic pain syndrome during 1 year. To evaluate the impact of early symptom regression subjects were classified as improved, no change or worse according to the rate of change using 1) all data, 2) excluding week 0 and 3) excluding weeks 0 and 2. Patient specific, time varying variability was calculated at each interval using a sliding window approach. Patients were classified as high, medium or low variability at each time and ultimately as high or low variability overall based on the variability for the majority of contacts. Results Prior to excluding early weeks to adjust for early symptom regression 25% to 38% and 5% to 6% of patients were classified as improved and worse, respectively. After adjustment the percent of patients who were improved or worse ranged from 15% to 25% and 6% to 9%, respectively. High and low variability phenotypes were each identified in 25% to 30% of participants. Conclusions Patients with urological chronic pelvic pain syndrome show symptom variability. At study enrollment patients had worse symptoms on average, resulting in a regression effect that influenced the estimated proportion of those who were improved or worse. Prospective studies should include a run-in period to account for regression to the mean and other causes of early symptom regression. Further, symptom variability may be quantified and used to characterize longitudinal symptom profiles of urological chronic pelvic pain syndrome.

Original languageEnglish (US)
Pages (from-to)1450-1455
Number of pages6
JournalJournal of Urology
Volume196
Issue number5
DOIs
StatePublished - Nov 1 2016

Keywords

  • cystitis
  • epidemiologic research design
  • interstitial
  • pain
  • prostate
  • symptom assessment

ASJC Scopus subject areas

  • Urology

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    Stephens-Shields, A. J., Clemens, J. Q., Jemielita, T., Farrar, J., Sutcliffe, S., Hou, X., Landis, J. R., Clemens, J. Q., Hanno, P., Kirkali, Z., Kusek, J. W., Landis, J. R., Lucia, M. S., Moldwin, R. M., Mullins, C., Pontari, M. A., Klumpp, D. J., Schaeffer, A. J., Apkarian, A. V., ... MAPP Research Network (2016). Symptom Variability and Early Symptom Regression in the MAPP Study: A Prospective Study of Urological Chronic Pelvic Pain Syndrome. Journal of Urology, 196(5), 1450-1455. https://doi.org/10.1016/j.juro.2016.04.070