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NIH funds pediatric patient-reported outcomes consortium

Monday, September 28, 2015

The National Institutes of Health has awarded nearly $144 million in new grants to develop new tools and measures that can be used to investigate more effectively environmental exposures from the womb through later years in a child’s life. These projects will enhance the next phase of research on the effects of environmental exposures on child health and development.

One of the recipients is Laura Schanberg, MD, co-chief of the Pediatric Division of Rheumatology, who will serve as part of a larger network of investigators seeking to 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.

"Technology advances have become a powerful driver in studying and understanding the start and spread of disease," said NIH Director Francis S. Collins, MD, PhD. "These projects will expand the toolbox available to researchers to improve our ability to characterize environmental exposures, understand how environmental exposures affect in utero development and function, and bolster the infrastructure for exposure research."

Environmental exposures are a leading cause of morbidity and mortality for mothers and children worldwide. These exposures encompass a number of factors, ranging from chemical and biological factors such as air pollution, pesticides and infectious diseases, to psychosocial factors such as education, stress and neglect. Exposures during crucial developmental windows, including conception and pregnancy, early childhood and puberty, can have long lasting effects. 

The purpose of Schanberg's project, the Validation of Pediatric Patient-Reported Outcomes in Chronic Diseases (PEPR) Consortium, is to test several pediatric PRO 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 these 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. Schanberg's center, which she will lead alongside Bryce Reeve, PhD, of the University of North Carolina at Chapel Hill, 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 other three centers will be located at Children's Hospital of Philadelphia, the Medical College of Wisconsin and the University of Wisconsin at Madison, and Northwestern University.