The National Institutes of Health has funded the Validation of Pediatric Patient-Reported Outcomes in Chronic Diseases (PEPR) Consortium. Investigators will capitalize on recent advances in the science of patient-reported outcomes (PROs) to improve pediatric health and well-being by capturing the voice and experience of children and their families living with a variety of chronic diseases and conditions.
The goal of the PEPR Consortium is to test several pediatric patient-reported outcome tools that measure aspects of physical, mental, and social well-being such as pain, anxiety, and peer relationships. The research will also help to improve understanding of the effects of environmental stressors on symptoms and quality of life in children with a variety of chronic diseases or conditions. By validating the pediatric PROMIS measures, the Consortium will facilitate their adoption and meaningful use in research and clinical care settings, ultimately improving the treatment of chronic diseases in children.
The Consortium comprises four centers:
- Children’s Hospital of Philadelphia (CHOP) led by Christopher Forrest, M.D., Ph.D., will leverage existing clinical studies to understand the experiences of children with Crohn’s disease and chronic kidney disease. The investigators hope to learn how these diseases influence children’s pain, fatigue, stress, and emotions. The CHOP center will also administer an Infrastructure and Opportunities Fund for the entire Consortium to support resources that provide additional assistance or technical expertise for projects undertaken by PEPR investigators.
- Medical College of Wisconsin and the University of Wisconsin-Madison led by Julie Panepinto, M.D., M.S.P.H., will help researchers to better understand how sickle cell disease, asthma, and type 1 diabetes affect children’s quality of life. Researchers will evaluate tools that measure pain, physical activity, stress, strength, and family belonging and involvement. In addition, the project has a special focus on understanding how environmental factors (including socioeconomic factors), at both the individual and community levels, affect children’s health. The research will be conducted in two clinical settings, emergency departments and health clinics.
- Northwestern University, led by Richard Gershon, Ph.D., and Amy Paller, M.D., will enhance understanding of the effects of asthma and atopic dermatitis (eczema), two of the most common chronic pediatric diseases, on children’s well-being. The investigators will use existing PROMIS tools to assess fatigue, pain, mobility, physical function, depressive symptoms, anxiety, stress, and peer relationships. In addition, the center will develop a new tool to evaluate itch. The researchers will study children in a range of settings (general population, doctor’s office, and hospital) and draw on three ongoing pediatric asthma clinical trials that include a significant number of African American and Hispanic/Latino children, as well as an Eczema Center with an ethnically and socioeconomically diverse patient population.
- University of North Carolina, Chapel Hill led by Bryce Reeve, Ph.D., and Duke University led by Laura Schanberg, M.D., will focus on understanding how living with juvenile idiopathic arthritis, lupus, cancer, or inflammatory bowel disease affects children’s well-being. Researchers will leverage several pediatric data collection networks to test tools that assess children’s physical, psychological, and social health including pain, fatigue, physical function, stress, anxiety, depressive symptoms, sense of meaning and purpose, and quality of family life and peer relationships.
The PEPR Consortium is part of a larger NIH-wide initiative to study the effects of environmental exposures on child health and development. For more information on this initiative, visithttps://www.nih.gov/news-events/news-releases/nih-awards-144-million-research-environmental-influences-child-health-development.
More information on PEPR.
The mission of the NIAMS, a part of the U.S. Department of Health and Human Services' National Institutes of Health, is to support research into the causes, treatment and prevention of arthritis and musculoskeletal and skin diseases; the training of basic and clinical scientists to carry out this research; and the dissemination of information on research progress in these diseases. For more information about the NIAMS, call the information clearinghouse at (301) 495-4484 or (877) 22-NIAMS (free call) or visit the NIAMS website at https://www.niams.nih.gov.