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Interpreting Patient-Reported Outcome Scores: Pediatric Inflammatory Bowel Disease as a Use Case
Julia Schuchard1, Adam C Carle2, Michael D Kappelman3
1Department of Pediatrics, Children's Hospital of Philadelphia (J Schuchard and CB Forrest), Philadelphia, Pa.
Insights
This study provides methods to interpret Patient-Reported Outcomes Measurement Information System (PROMIS) scores for pediatric inflammatory bowel disease (IBD) patients. It establishes IBD-specific percentiles and minimal clinically important differences for better score interpretation.
Area of Science:
- Pediatric gastroenterology
- Clinical trial methodology
- Health outcomes research
Background:
- Interpreting patient-reported outcome measure (PROM) scores in pediatric inflammatory bowel disease (IBD) is crucial for clinical decision-making.
- Existing interpretation methods may not adequately capture the nuances of health in pediatric IBD populations.
Purpose of the Study:
- To establish disease-specific percentiles and minimal clinically important difference (MCID) thresholds for 6 pediatric PROMIS measures in patients with IBD.
- To demonstrate the application of these interpretation tools using data from a clinical trial.
Main Methods:
- A prospective cohort study of 1049 patients (ages 8-23) with IBD was used to establish IBD-specific percentiles and MCID for 6 PROMIS measures.
- These measures, along with general population percentiles and reliable change index, were applied to interpret PROM scores in a clinical trial sample (n=294, ages 8-20) at baseline and 3 months.
Main Results:
- At baseline, the clinical trial sample reported worse health than the general population (e.g., 22% above 95th percentile for Fatigue).
- Compared to a reference IBD sample, the clinical trial sample showed slightly worse scores (e.g., 8% above 95th percentile for Fatigue).
- MCID application showed that among patients with improved Pediatric Crohn's Disease Activity Index scores, significant proportions also improved in IBD Symptoms (45%), Fatigue (47%), and Pain Interference (65%).
Conclusions:
- This study successfully established IBD-specific percentiles for 6 pediatric PROMIS measures.
- The findings demonstrate the utility of these percentiles and MCID for interpreting PROM scores in pediatric IBD clinical trials.
- These tools enhance the understanding of patient-reported outcomes in this population.
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.
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