Patient-Reported Outcomes Measurement Information System™ (PROMIS): The Science of Patient Reported Outcomes

The Patient-Reported Outcomes Measurement Information System™ (PROMIS) demonstrates cooperative collaboration between the federal government and academic institutions to improve public health through innovative and effective information technology and informatics applications. As a National Institutes of Health (NIH) Roadmap initiative, PROMIS™ is an innovative tool assessing health outcomes from the patient perspective. PROMIS™ combines the use of Item Response Theory (IRT) and Computer Adaptive Testing (CAT) administering a flexible, automated tool measuring health outcomes. The PROMIS™ Network consists of six primary research sites and a statistical coordinating center in collaboration with NIH scientists. PROMIS™ objectives are to: 1) develop and test a large bank of items measuring patient-reported outcomes, 2) create a computerized adaptive testing system that provides efficient, psychometrically robust assessment of clinical patient-reported outcomes in various chronic diseases, and 3) create a publicly available system that could be added to and modified periodically to allow clinical researchers access to a common repository of items and the CAT system. The PROMIS™ initiative has exceeded its goals of developing item banks of disease non-specific PRO domains and making them available as short forms and CAT through the web-based PROMIS™ Assessment Center (www.nihpromis.org). The PROMIS™ consists of 6 domains measuring global health, physical function, fatigue, pain, emotional distress, and social health. PROMIS™ has 600 registered users, 161 study-specific websites created, and several studies currently accruing participants. Due to the success of the initial funding phase of PROMIS™, NIH has released four Requests for Applications to support the continued development of PROMIS™.