TY - JOUR
T1 - Interpreting Patient-Reported Outcome Scores
T2 - Pediatric Inflammatory Bowel Disease as a Use Case
AU - ImproveCareNow Pediatric IBD Learning Health System and COMBINE study team
AU - Schuchard, Julia
AU - Carle, Adam C.
AU - Kappelman, Michael D.
AU - Tucker, Carole A.
AU - Forrest, Christopher B.
N1 - Funding Information:
The following ImproveCareNow and COMBINE authors participated in data collection and reviewed the manuscript: Jeremy Adler; Rana F. Ammoury; Keith Benkov; Brendan Boyle; José M. Cabrera; Jennifer L. Clegg; Jill M. Dorsey; Dawn R. Ebach; Lina M. Felipez; Ann M. Firestine; Arieda Gjikopulli; Ajay S. Gulati; Edward J. Hoffenberg; Traci W. Jester; Jess L. Kaplan; Mark E. Kusek; Dale Y. Lee; Tiffany M. Linville; Peter Margolis; Phillip Minar; Zarela Molle Rios; Jonathan Moses; B. Joanna Niklinska-Schirtz; Helen Pappa; Dinesh S. Pashankar; Shehzad A. Saeed; Charles M. Samson; Kelly C. Sandberg; Steven J. Steiner; Jillian S. Sullivan; Jeanne Tung; Prateek Wali. Financial statement: Research reported in this publication was supported by the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) (grant numbers U01AR057956 to Forrest and U19AR069525 to Forrest); Patient Centered Outcomes Research Institute (grant number PCS-1406-18643 to Kappelman); Helmsley Charitable Trust (grant number 2016PG-IBD003 to Kappelman). The sponsors had no role in the design and conduct of the study. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.
Funding Information:
Financial statement: Research reported in this publication was supported by the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) (grant numbers U01AR057956 to Forrest and U19AR069525 to Forrest); Patient Centered Outcomes Research Institute (grant number PCS-1406-18643 to Kappelman); Helmsley Charitable Trust (grant number 2016PG-IBD003 to Kappelman). The sponsors had no role in the design and conduct of the study. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.
Publisher Copyright:
© 2022 Academic Pediatric Association
PY - 2022/11/1
Y1 - 2022/11/1
N2 - 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.
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.
KW - Child
KW - Crohn disease
KW - inflammatory bowel diseases
KW - patient-reported outcome measures
KW - treatment outcome
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U2 - 10.1016/j.acap.2021.12.029
DO - 10.1016/j.acap.2021.12.029
M3 - Article
C2 - 34995822
AN - SCOPUS:85125534140
SN - 1876-2859
VL - 22
SP - 1520
EP - 1528
JO - Academic Pediatrics
JF - Academic Pediatrics
IS - 8
ER -