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Patient-Reported Outcomes Measurement Information System in Children with Crohn's Disease

Marina Arvanitis1, Darren A DeWalt1, Christopher F Martin1

  • 1University of North Carolina at Chapel Hill, Chapel Hill, NC.

The Journal of Pediatrics
|May 10, 2016
PubMed

Insights

Patient-Reported Outcomes Measurement Information System (PROMIS) scores accurately reflect disease activity and quality of life in children with Crohn's disease. PROMIS demonstrated validity and responsiveness in this pediatric cohort.

Area of Science:

  • Pediatric gastroenterology
  • Health outcomes research
  • Psychometrics

Background:

  • Crohn's disease significantly impacts children's quality of life.
  • Accurate measurement of patient-reported outcomes is crucial for managing pediatric inflammatory bowel disease.
  • The Patient-Reported Outcomes Measurement Information System (PROMIS) offers a suite of validated measures for various health domains.

Purpose of the Study:

  • To evaluate the criterion validity of PROMIS measures in a cohort of children with Crohn's disease.
  • To assess the responsiveness of PROMIS measures to changes in Crohn's disease activity over time.
  • To support the use of pediatric PROMIS in clinical research and practice for pediatric Crohn's disease.

Main Methods:

  • Recruitment of children (ages 9-17) with Crohn's disease from a web-based registry.
  • Collection of self-reported data on disease activity, quality of life, and PROMIS domains (pain, anxiety, depression, fatigue, peer relationships) at baseline and 6 months.
  • Analysis of associations between PROMIS scores and established measures of disease activity (Short Crohn's Disease Activity Index, Manitoba Index, IMPACT-35).

Main Results:

  • PROMIS scores were significantly worse in patients with higher self-reported Crohn's disease activity and lower quality of life.
  • PROMIS scores demonstrated responsiveness to changes in disease activity over a 6-month period.
  • Improvements in Crohn's disease activity correlated with improved PROMIS scores, except for anxiety, which showed less improvement in those with stable or worsened disease.

Conclusions:

  • Pediatric PROMIS measures exhibit criterion validity, correlating significantly with established measures of Crohn's disease activity.
  • PROMIS scores are responsive to changes in disease activity, supporting their utility in tracking treatment response.
  • These findings validate the use of pediatric PROMIS for assessing outcomes in children with Crohn's disease.
Abstract

Keywords:
Crohn's diseasePROMISanxietydepressionfatiguepatient-reported outcomespeer relationshipsquality of life

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