Symptom Variability and Early Symptom Regression in the MAPP Study

A Prospective Study of Urological Chronic Pelvic Pain Syndrome

MAPP Research Network

Research output: Contribution to journalArticle

12 Citations (Scopus)

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

Fingerprint

Pelvic Pain
Chronic Pain
Prospective Studies
Phenotype

Keywords

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

ASJC Scopus subject areas

  • Urology

Cite this

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

In: Journal of Urology, Vol. 196, No. 5, 01.11.2016, p. 1450-1455.

Research output: Contribution to journalArticle

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title = "Symptom Variability and Early Symptom Regression in the MAPP Study: A Prospective Study of Urological Chronic Pelvic Pain Syndrome",
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.",
keywords = "cystitis, epidemiologic research design, interstitial, pain, prostate, symptom assessment",
author = "{MAPP Research Network} and Stephens-Shields, {Alisa J.} and Clemens, {J. Quentin} and Thomas Jemielita and John Farrar and Siobhan Sutcliffe and Xiaoling Hou and Landis, {J. Richard} and Clemens, {J. Quentin} and Philip Hanno and Ziya Kirkali and Kusek, {John W.} and Landis, {J. Richard} and Lucia, {M. Scott} and Moldwin, {Robert M.} and Chris Mullins and Pontari, {Michel A.} and Klumpp, {David J.} and Schaeffer, {Anthony J.} and Apkarian, {Apkar (Vania)} and David Cella and Farmer, {Melissa A.} and Colleen Fitzgerald and Richard Gershon and Griffith, {James W.} and Heckman, {Charles J.} and Mingchen Jiang and Laurie Keefer and Marko, {Darlene S.} and Jean Michniewicz and Todd Parrish and Frank Tu and Mayer, {Emeran A.} and Rodr{\'i}guez, {Larissa V.} and Jeffry Alger and Ashe-McNalley, {Cody P.} and Ben Ellingson and Nuwanthi Heendeniya and Lisa Kilpatrick and Cara Kulbacki and Jason Kutch and Labus, {Jennifer S.} and Naliboff, {Bruce D.} and Fornessa Randal and Smith, {Suzanne R.} and Kreder, {Karl J.} and Bradley, {Catherine S.} and Mary Eno and Kris Greiner and Yi Luo and North, {Carol S}",
year = "2016",
month = "11",
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pages = "1450--1455",
journal = "Journal of Urology",
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TY - JOUR

T1 - Symptom Variability and Early Symptom Regression in the MAPP Study

T2 - A Prospective Study of Urological Chronic Pelvic Pain Syndrome

AU - MAPP Research Network

AU - Stephens-Shields, Alisa J.

AU - Clemens, J. Quentin

AU - Jemielita, Thomas

AU - Farrar, John

AU - Sutcliffe, Siobhan

AU - Hou, Xiaoling

AU - Landis, J. Richard

AU - Clemens, J. Quentin

AU - Hanno, Philip

AU - Kirkali, Ziya

AU - Kusek, John W.

AU - Landis, J. Richard

AU - Lucia, M. Scott

AU - Moldwin, Robert M.

AU - Mullins, Chris

AU - Pontari, Michel A.

AU - Klumpp, David J.

AU - Schaeffer, Anthony J.

AU - Apkarian, Apkar (Vania)

AU - Cella, David

AU - Farmer, Melissa A.

AU - Fitzgerald, Colleen

AU - Gershon, Richard

AU - Griffith, James W.

AU - Heckman, Charles J.

AU - Jiang, Mingchen

AU - Keefer, Laurie

AU - Marko, Darlene S.

AU - Michniewicz, Jean

AU - Parrish, Todd

AU - Tu, Frank

AU - Mayer, Emeran A.

AU - Rodríguez, Larissa V.

AU - Alger, Jeffry

AU - Ashe-McNalley, Cody P.

AU - Ellingson, Ben

AU - Heendeniya, Nuwanthi

AU - Kilpatrick, Lisa

AU - Kulbacki, Cara

AU - Kutch, Jason

AU - Labus, Jennifer S.

AU - Naliboff, Bruce D.

AU - Randal, Fornessa

AU - Smith, Suzanne R.

AU - Kreder, Karl J.

AU - Bradley, Catherine S.

AU - Eno, Mary

AU - Greiner, Kris

AU - Luo, Yi

AU - North, Carol S

PY - 2016/11/1

Y1 - 2016/11/1

N2 - 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.

AB - 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.

KW - cystitis

KW - epidemiologic research design

KW - interstitial

KW - pain

KW - prostate

KW - symptom assessment

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U2 - 10.1016/j.juro.2016.04.070

DO - 10.1016/j.juro.2016.04.070

M3 - Article

VL - 196

SP - 1450

EP - 1455

JO - Journal of Urology

JF - Journal of Urology

SN - 0022-5347

IS - 5

ER -