The Patient-Reported Outcomes Measurement Information System ( PROMIS) is an NIH Roadmap (RM)-funded initiative. The original FOA, "Dynamic Assessment of Patient-Reported Chronic Disease Outcomes"(RFA-RM-04-011) was awarded in August 2004 to six primary research sites and a statistical coordinating center to form the PROMIS Network.
The broad objectives of the initial FOA were to:
- Develop and test a large bank of items measuring patient-reported outcomes (PROs).
- Create a computerized adaptive testing (CAT) system that would allow for efficient, psychometrically robust assessment of PROs in clinical research involving a wide range of chronic diseases.
- Create a publicly available system that could be added to and modified periodically and that would allow clinical researchers to access a common repository of items and CAT system.
The Patient-Reported Outcomes Measurement Information System ( PROMIS ) is a collaborative network of investigators established to capture information on patients with chronic disease which is outside the scope of conventional clinical and functional measures of disease status. Such aspects of patients’ subjective experience, such as symptom severity and frequency, emotional and social well-being, and perceived level of health and functional ability, could provide important targets for disease intervention, but historically have not been collected in a systematic way. While a proliferation of tools has been developed to measure symptoms, quality of life, functional status, emotional status, and general perception of health, instruments with non-comparable or non-combinable scores make comparability among studies difficult. It is the goal of PROMIS to enhance clinical outcomes research by making available a psychometrically validated, dynamic system to measure patient-reported outcomes (PROs) efficiently in study participants with a wide range of chronic disease and demographic characteristics. Implementing a system to develop, maintain, and add to item banks, to compare items and conduct statistical modeling of responses, and to create computerized adaptive testing will be extremely useful in clinical practice to assess response to interventions and to inform modification of treatment plans.
PROMIS investigators will work to improve measurement of patient-reported outcomes. The network will focus on the collection of self-report data from a diverse population of individuals, including racial and ethnic minorities, having a variety of chronic diseases. PROMIS will support a comprehensive and integrated approach to data collection, storage, and management, and will have a Statistical Coordinating Center that will manage analyses and generation of item banks and computerized adaptive systems.