PMID- 34995822
OWN - NLM
STAT- MEDLINE
DCOM- 20221115
LR  - 20231102
IS  - 1876-2867 (Electronic)
IS  - 1876-2859 (Print)
IS  - 1876-2859 (Linking)
VI  - 22
IP  - 8
DP  - 2022 Nov-Dec
TI  - Interpreting Patient-Reported Outcome Scores: Pediatric Inflammatory Bowel 
      Disease as a Use Case.
PG  - 1520-1528
LID - S1876-2859(21)00648-3 [pii]
LID - 10.1016/j.acap.2021.12.029 [doi]
AB  - OBJECTIVE: To demonstrate how to interpret Patient-Reported Outcomes Measurement 
      Information System (PROMIS) pediatric patient-reported outcome measure (PROM) 
      scores for patients with pediatric inflammatory bowel disease (IBD). METHODS: 
      Using data from a prospective cohort study of patients ages 8 to 23 years with 
      IBD (n = 1049), we established disease-specific percentiles and computed the 
      minimal clinically important difference (MCID) change score for 6 pediatric 
      PROMs. We applied these results, general population percentiles, and the reliable 
      change index to interpret PROM scores in a clinical trial sample of patients ages 
      8 to 20 years with IBD (n = 294) in which PROMIS PROMs were obtained at baseline 
      and 3 months later. RESULTS: Application of general population percentiles showed 
      that the clinical trial sample at baseline had moderately worse self-reported 
      health than the general population (22% of patients at or above the 95th 
      percentile on Fatigue; 21% on Pain Interference). IBD-specific percentiles showed 
      that the sample was somewhat worse than the reference IBD sample (8% of patients 
      at or above the 95th percentile on Fatigue; 11% on Pain Interference). 
      Application of the MCID threshold indicated that among the subgroup of patients 
      that improved by 15 or more on the short Pediatric Crohn's Disease Activity Index 
      (n = 38), 45% also improved on IBD Symptoms, 47% for Fatigue, and 65% for Pain 
      Interference. CONCLUSION: This study established IBD-specific percentiles for 6 
      pediatric PROMIS measures and demonstrated the application of percentiles and 
      other methods for interpreting PROM scores.
CI  - Copyright (c) 2022 Academic Pediatric Association. Published by Elsevier Inc. All 
      rights reserved.
FAU - Schuchard, Julia
AU  - Schuchard J
AD  - Department of Pediatrics, Children's Hospital of Philadelphia (J Schuchard and CB 
      Forrest), Philadelphia, Pa. Electronic address: schuchardj@chop.edu.
FAU - Carle, Adam C
AU  - Carle AC
AD  - Department of Pediatrics, Cincinnati Children's Hospital Medical Center, 
      University of Cincinnati College of Medicine (AC Carle), Cincinnati, Ohio; 
      Department of Pediatrics, University of Cincinnati College of Arts and Sciences 
      (AC Carle), Cincinnati, Ohio; Department of Psychology, University of Cincinnati 
      College of Arts and Sciences (AC Carle), Cincinnati, Ohio.
FAU - Kappelman, Michael D
AU  - Kappelman MD
AD  - Department of Pediatrics, University of North Carolina at Chapel Hill School of 
      Medicine (MD Kappelman), Chapel Hill, NC.
FAU - Tucker, Carole A
AU  - Tucker CA
AD  - Department of Health and Rehabilitation Sciences, Temple University College of 
      Public Health (CA Tucker), Philadelphia, Pa.
FAU - Forrest, Christopher B
AU  - Forrest CB
AD  - Department of Pediatrics, Children's Hospital of Philadelphia (J Schuchard and CB 
      Forrest), Philadelphia, Pa.
CN  - ImproveCareNow Pediatric IBD Learning Health System and COMBINE study team
LA  - eng
GR  - U01 AR057956/AR/NIAMS NIH HHS/United States
GR  - U19 AR069525/AR/NIAMS NIH HHS/United States
PT  - Journal Article
PT  - Research Support, N.I.H., Extramural
PT  - Research Support, Non-U.S. Gov't
DEP - 20220105
PL  - United States
TA  - Acad Pediatr
JT  - Academic pediatrics
JID - 101499145
SB  - IM
MH  - Child
MH  - Humans
MH  - Adolescent
MH  - Young Adult
MH  - Adult
MH  - Prospective Studies
MH  - *Patient Reported Outcome Measures
MH  - *Inflammatory Bowel Diseases
MH  - Fatigue
MH  - Chronic Disease
MH  - Pain
PMC - PMC9253201
MID - NIHMS1770470
OTO - NOTNLM
OT  - Child
OT  - Crohn disease
OT  - inflammatory bowel diseases
OT  - patient-reported outcome measures
OT  - treatment outcome
COIS- Declarations of Competing Interest The authors have no conflicts of interest 
      relevant to this article to disclose.
EDAT- 2022/01/08 06:00
MHDA- 2022/11/16 06:00
PMCR- 2023/11/01
CRDT- 2022/01/07 20:16
PHST- 2021/07/28 00:00 [received]
PHST- 2021/12/22 00:00 [revised]
PHST- 2021/12/26 00:00 [accepted]
PHST- 2022/01/08 06:00 [pubmed]
PHST- 2022/11/16 06:00 [medline]
PHST- 2022/01/07 20:16 [entrez]
PHST- 2023/11/01 00:00 [pmc-release]
AID - S1876-2859(21)00648-3 [pii]
AID - 10.1016/j.acap.2021.12.029 [doi]
PST - ppublish
SO  - Acad Pediatr. 2022 Nov-Dec;22(8):1520-1528. doi: 10.1016/j.acap.2021.12.029. Epub 
      2022 Jan 5.