Validity of PROMIS® Pediatric measures (fatigue, pain interference, pain behavior, mobility, upper extremity, physical activity, and strength impact) in children aged ≥8 years with chronic nonbacterial osteomyelitis (CNO), assessed using a longitudinal patient registry with >1,000 clinical visits from 184 patients.
All PROMIS T-scores correlated significantly (p<0.01) with patient-reported variables and physician global assessment (PHGA; r=0.75). Mobility, pain behavior (PB), and pain interference (PI) showed good correlation with function (r=0.4–0.6); after effective treatment (disease activity score improvement ≥3 points, n=18), PROMIS T-scores for mobility, PB, PI, and upper extremity changed significantly (p<0.05).
Small subset (n=18) used to assess responsiveness to treatment limits statistical power. Registry is limited to English-speaking patients, reducing generalizability. No comparator group or blinded outcome assessment was used.
PROMIS Pediatric mobility, pain behavior, and pain interference measures are valid tools for monitoring disease activity in children with CNO. Clinicians can incorporate these patient-reported measures into routine CNO follow-up to track meaningful clinical change over time.
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