Pediatric Patient Reported Outcomes in Chronic Diseases Consortium



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The Pediatric Patient Reported Outcomes in Chronic Diseases (PEPR) Consortium is transforming the health and healthcare of children with chronic conditions by advancing the science of pediatric patient-reported outcome measures. The long-term goals of the Consortium are to:

  • Develop reliable, validated clinical tools for pediatric PROs designed to improve the assessment of outcomes in clinical trials or other research settings and personalize ongoing care of chronic diseases in children
  • Examine the impact of environmental stressors on children’s health, including their symptoms and quality of life. To meet these ends, PEPR’s four Centers of Excellence — CHOP, Duke University, Medical College of Wisconsin, and Northwestern University — are each leading multiple studies measuring the experiences of children with chronic conditions using Patient-Reported Outcomes Measurement Information System (PROMIS) measures.

PROMIS is a set of person-centered measures designed to evaluate physical, mental, and social health in children and adults. Collectively, the PEPR Consortium’s projects are using 23 PROMIS measures to evaluate the experiences of children with 11 different chronic conditions.

Research Project Highlights

CHOP’s three PEPR studies are examining the experiences of childhood cancer survivors, of children with Crohn’s disease, and of children with chronic kidney disease. Each project assesses the content validity, clinical meaningfulness of scores, responsiveness to clinical change, and longitudinal construct validity of pediatric PROMIS measures for one of the chronic conditions.

  • Chron’s disease: CHOP is collaborating with University of North Carolina to evaluate the use of PRO measures with children with Crohn’s disease alongside a clinical trial evaluating the effectiveness of low-dose methotrexate in treating the disease.
  • Chronic kidney disease: CHOP is assessing the quality of life in children with chronic kidney disease by leveraging an existing network of hospitals involved in the Chronic Kidney Disease in Children (CKiD) study, a prospective cohort study which follows participants annually until they initiate renal replacement therapy (dialysis or renal transplant).
  • Cancer survivors: CHOP is partnering with St. Jude Children’s Research Hospital’s After Completion of Therapy (ACT) clinic to test the longitudinal clinical validity of PROMIS measures among childhood cancer survivors.

CHOP also administers an Infrastructure and Opportunities Fund for the entire Consortium, which provides additional assistance or technical expertise for projects undertaken by PEPR investigators.