title: The Patient-Reported Outcomes Measurement Information System (PROMIS): progress of an NIH Roadmap cooperative group during its first two years.
abstract: BACKGROUND
  The National Institutes of Health (NIH) Patient-Reported Outcomes Measurement Information System (PROMIS) Roadmap initiative (www.nihpromis.org) is a 5-year cooperative group program of research designed to develop, validate, and standardize item banks to measure patient-reported outcomes (PROs) relevant across common medical conditions. In this article, we will summarize the organization and scientific activity of the PROMIS network during its first 2 years.
  
  
  METHODS
  The network consists of 6 primary research sites (PRSs), a statistical coordinating center (SCC), and NIH research scientists. Governed by a steering committee, the network is organized into functional subcommittees and working groups. In the first year, we created an item library and activated 3 interacting protocols: Domain Mapping, Archival Data Analysis, and Qualitative Item Review (QIR). In the second year, we developed and initiated testing of item banks covering 5 broad domains of self-reported health.
  
  
  RESULTS
  The domain mapping process is built on the World Health Organization (WHO) framework of physical, mental, and social health. From this framework, pain, fatigue, emotional distress, physical functioning, social role participation, and global health perceptions were selected for the first wave of testing. Item response theory (IRT)-based analysis of 11 large datasets supplemented and informed item-level qualitative review of nearly 7000 items from available PRO measures in the item library. Items were selected for rewriting or creation with further detailed review before the first round of testing in the general population and target patient populations.
  
  
  CONCLUSIONS
  The NIH PROMIS network derived a consensus-based framework for self-reported health, systematically reviewed available instruments and datasets that address the initial PROMIS domains. Qualitative item research led to the first wave of network testing which began in the second year.
authors: Evanston Northwestern Healthcare, Evanston, Illinois 60201, USA. d-cella@northwestern.edu
authors: David
authors: D
authors: Cella
authors: Susan
authors: S
authors: Yount
authors: Nan
authors: N
authors: Rothrock
authors: Richard
authors: R
authors: Gershon
authors: Karon
authors: K
authors: Cook
authors: Bryce
authors: B
authors: Reeve
authors: Deborah
authors: D
authors: Ader
authors: James F
authors: JF
authors: Fries
authors: Bonnie
authors: B
authors: Bruce
authors: Mattias
authors: M
authors: Rose
mesh_terms: D003299:Cooperative Behavior; D019992:Databases as Topic; D007256:Information Systems; D009316:National Institutes of Health (U.S.); D017063:Outcome Assessment, Health Care; D011788:Quality of Life; D012650:Self Disclosure; D014481:United States