Validation of Patient‐Reported Outcomes Measurement Information System® ( PROMIS ®) Pediatric Measures for Children with Chronic Nonbacterial Osteomyelitis

OBJECTIVES: To assess the validity of the Patient-Reported Outcomes Measurement Information System® (PROMIS®) Pediatric measures in patients with chronic nonbacterial osteomyelitis (CNO). METHODS: Within the longitudinal patient registry of CNO, English-speaking patients aged 8 years and older self-reported PROMIS Pediatric measures of fatigue, pain interference (PI), pain behavior (PB), mobility, upper extremity (UE), physical activity (PA) and strength impact (SI), and external validation measures. Log-transformed linear mixed-effects models with random patient intercepts were used to assess PROMIS T-score changes. Wilcoxon signed-rank test was performed to determine the PROMIS T-score changes among the improved, worsened, and unchanged groups. Spearman rank correlation test determined the relationship of PROMIS T-scores with disease status reported by patients/families. RESULTS: More than 1,000 clinical visits from 184 patients included PROMIS Pediatric measures entries. All PROMIS T-scores correlated significantly (p<0.01) with patient-reported variables and physician global assessment (PHGA). The correlation between function and mobility, PB, and PI was good (r=0.4-0.6). The correlation of patient-reported disease status was strong with PHGA (r=0.75), moderate with mobility, PB, PI, and weak with Fatigue, SI, UE, and PA. The changes of PROMIS T-scores over time for mobility, PB, PA, and PI compared to the self-reported status change were significant (p<0.05). After effective treatment, when clinical disease activity score improved by at least 3 points (n=18), the change of PROMIS T-scores for mobility, PB, PI, UE were significant (p<0.05). CONCLUSION: This study provided evidence supporting the use of PROMIS Pediatric mobility, pain behavior, and pain interference measures for CNO clinical disease monitoring.

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Journal
Arthritis Care & Research
Published
2026-08-25
DOI
https://doi.org/10.1002/acr.80146
Primary Topic
Orthopedic Infections and Treatments
Type
article
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article

Validation of Patient‐Reported Outcomes Measurement Information System® ( PROMIS ®) Pediatric Measures for Children with Chronic Nonbacterial Osteomyelitis

Leonard K. Kovalick, Doaa Mosad Mosa, Gabriel Casselman, Yurong Shao et al.
Arthritis Care & Research
Orthopedic Infections and Treatments
article

Validation of Patient‐Reported Outcomes Measurement Information System® ( PROMIS ®) Pediatric Measures for Children with Chronic Nonbacterial Osteomyelitis

Leonard K. Kovalick, Doaa Mosad Mosa, Gabriel Casselman, Yurong Shao, Laura E. Schanberg, Lori B. Tucker, Yongdong Zhao, Georgina Tiller, Ümmüşen Kaya Akça, Aleksander Lenert, Marinka Twilt, Joshua Scheck, Manuela Pardeo, Polly J. Ferguson, Bin Huang, Erin Balay‐Dustrude, Melissa Oliver, Seza Özen, Mary Eckert, J Akikusa, Adriel Liau, Sivia Lapidus, Fatma Dedeoğlu, Eveline Y. Wu, Claire Yang, Ava Klein, HJ Girschick, E. Mueller, Sara Stern, Natalie Rosenwasser, Karen Onel, Elise Machrone, Antonella Insalaco, Bryce B. Reeve, Ronald M. Laxer, Christian M. Hedrich, Shima Yasin, Gabriele Simonini, Iris Hamilton, Xing Wang, Edoardo Marrani, Molly Briggs, Paige Rhiannon Trunnell, Emily Deng
article en

Abstract

OBJECTIVES: To assess the validity of the Patient-Reported Outcomes Measurement Information System® (PROMIS®) Pediatric measures in patients with chronic nonbacterial osteomyelitis (CNO). METHODS: Within the longitudinal patient registry of CNO, English-speaking patients aged 8 years and older self-reported PROMIS Pediatric measures of fatigue, pain interference (PI), pain behavior (PB), mobility, upper extremity (UE), physical activity (PA) and strength impact (SI), and external validation measures. Log-transformed linear mixed-effects models with random patient intercepts were used to assess PROMIS T-score changes. Wilcoxon signed-rank test was performed to determine the PROMIS T-score changes among the improved, worsened, and unchanged groups. Spearman rank correlation test determined the relationship of PROMIS T-scores with disease status reported by patients/families. RESULTS: More than 1,000 clinical visits from 184 patients included PROMIS Pediatric measures entries. All PROMIS T-scores correlated significantly (p<0.01) with patient-reported variables and physician global assessment (PHGA). The correlation between function and mobility, PB, and PI was good (r=0.4-0.6). The correlation of patient-reported disease status was strong with PHGA (r=0.75), moderate with mobility, PB, PI, and weak with Fatigue, SI, UE, and PA. The changes of PROMIS T-scores over time for mobility, PB, PA, and PI compared to the self-reported status change were significant (p<0.05). After effective treatment, when clinical disease activity score improved by at least 3 points (n=18), the change of PROMIS T-scores for mobility, PB, PI, UE were significant (p<0.05). CONCLUSION: This study provided evidence supporting the use of PROMIS Pediatric mobility, pain behavior, and pain interference measures for CNO clinical disease monitoring.

Arthritis Care & Research
University of North Carolina at Chapel Hill (US), University of Iowa (US), Hospital for Special Surgery (US), Cincinnati Children's Hospital Medical Center (US), Boston Children's Hospital (US), Center for Infectious Disease Research (US), St. Michael's Hospital (CA), Royal Children's Hospital (AU), Hackensack University Medical Center (US), Humanitas University (IT), University of British Columbia (CA), University of Liverpool (GB), Mansoura University (EG), Duke University (US), University of Toronto (CA), University of Washington (US), University of Utah (US), Hospital for Sick Children (CA), Alberta Children's Hospital (CA), Clinical Research Institute (US), Mansoura University Hospital (EG), Alder Hey Children's NHS Foundation Trust (GB), Seattle Children's Hospital (US), Meyer Children's Hospital (IT), Bambino Gesù Children's Hospital (IT), St. Joseph's Children's Hospital (US), Italian Society of Periodontology and Implantology (IT), Hackensack Meridian Health (US), Klinikum im Friedrichshain (DE), BC Children's Hospital (CA), Indiana University – Purdue University Indianapolis (US), Seattle University (US), Hacettepe University (TR), University of Cincinnati Medical Center (US), Western University of Health Sciences (US)
Good health and well-being
Openalex Percentile: Top 7%
Orthopedic Infections and Treatments
DOIOpen Access PDFOpenAlex
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