Acad Pediatr. 2022 Jan 4:S1876-2859(21)00648-3. doi: 10.1016/j.acap.2021.12.029. Online ahead of print.
OBJECTIVE: To demonstrate how to interpret 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 8-23 years with IBD (n = 1,049), we established disease-specific percentiles and computed the minimal clinically important difference (MCID) change score for six 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 8-20 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 six pediatric PROMIS measures and demonstrated the application of percentiles and other methods for interpreting PROM scores.
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