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

The Patient-Reported Outcomes Measurement Information System® (PROMIS) demonstrates a 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 fifteen research center and sites 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 15 domains measuring global health, physical function, fatigue, pain, emotional distress, and social health. PROMIS® has more than 2600 registered users and 22,258 study participants. Currently in the second funding phase of the initiative, PROMIS® has expanded domain development and validation to include Pediatrics, Women, Minorities, and Persons with disabilities.