PROMIS Pediatrics: Longitudinal Validation and Linking Pediatric and Adult Item Banks
The NIH initiated the Patient-Reported Outcomes Measurement Information System (PROMIS) project in 2005 to address the limitations of current instruments for patient-reported outcomes (PROs) measurement, including developing item banks for adult and pediatric populations. The PROMIS is one of the NIH’s roadmap projects. The primary objective of the present project is to validate the NIH’s PROMIS pediatric item banks in four pediatric chronic illnesses. Five academic institutions will participate in this pediatric PROMIS network, including Children’s National Medical Center, Emory University, University of Florida, University of Michigan–Ann Arbor, and University of North Carolina–Chapel Hill (the coordinating site). We propose longitudinal studies in children with asthma, cancer, nephrotic syndrome, and sickle cell disease. Each study follows children through a clinical transition known to affect PROs, and each study will examine the responsiveness of the PROMIS instruments and estimate the minimum important difference (MID) for children. The secondary objective is to link the PROMIS pediatric and adult item banks. This study will enable researchers to have comparable scores between children and adults participating in the same study and enable longitudinal studies that follow children into adulthood.
University of Florida (site PI: Dr. I-Chan Huang) will lead a longitudinal asthma study with a specific aim of measuring responsiveness and MIDs of the PROMIS item banks associated with acute changes in clinical status. Additionally, UF team will collect data for linking the pediatric and adult PROMIS item banks and collaborate with the L.L. Thurstone Psychometric Laboratory at the University of North Carolina–Chapel Hill to analyze the linked data. The population under UF’s investigation is children who are enrolled in the Florida and Texas Medicaid programs, between 8 through 18 years old. The UF research team is comprised of faculty members from the Institute for Child Health Policy and the Departments of Epidemiology and Health Policy Research, and Pediatrics. This pediatric PROMIS project will be conducted between November 2009 and October 2013.
See PROMIS Home Page http://www.nihpromis.org for more information.