Patient-Reported Outcomes Measurement Information System

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The Patient Reported Outcomes Measurement Information System[1] (PROMIS®) provides clinicians and researchers access to reliable, valid, and flexible measures of health status that assess physical, mental, and social well–being from the patient perspective. PROMIS measures are standardized, allowing for assessment of many patient-reported outcome domains—including pain, fatigue, emotional distress, physical functioning and social role participation—based on common metrics that allow for comparisons across domains, across chronic diseases, and with the general population. Further, PROMIS® tools allow for computer adaptive testing, efficiently achieving precise measurement of health status domains with few items. There are PROMIS measures for both adults and children. PROMIS® was established in 2004 with funding from the National Institutes of Health (NIH) as one of the initiatives of the NIH Roadmap for Medical Research.[2]

Background and history

The NIH established the Roadmap for Medical Research in 2004 to identify major opportunities for medical research and the development of new scientific expertise and technology that would lead to tangible benefits for patients.[3] One of the programs within the Roadmap, Re-engineering the Clinical Research Enterprise, called for developing rigorous and systematic infrastructure for clinical research and for translating scientific discoveries into practical applications or tools that can be used by healthcare providers.[4] PROMIS is one initiative within this program. The PROMIS initiative develops and evaluates standard measures for key patient-reported health indicators and symptoms.[5] Patient-reported measures such as pain, fatigue, emotional distress, and physical functioning complement clinical measures (e.g., x-rays and lab tests) by providing healthcare providers with information about what patients are able to do and how they feel.[6]

PROMIS has worked to unify the field of patient-reported outcome (PRO) measurement through the promotion of a common, systematic measurement system broadly applicable across clinical research. PROMIS measures are intended to assess the most common or salient dimensions of patient–relevant outcomes for the widest possible range of chronic disorders and diseases, thus they are “generic” measures vs. specific to given disease or condition. Structured as a multi-institutional collaboration with NIH, PROMIS has advanced the consensus process within the field of PRO measurement through the involvement of the funded research collaborative in establishing a rigorous, systematic infrastructure for measure development and psychometric evaluation.[6]

PROMIS takes advantage of developments in technology, as well as advances in the sciences of psychometric, qualitative, cognitive, and health survey research, to create new models and methods for collecting PROs for use in clinical research and evaluation of medical care.[7] PROMIS incorporates and translates cutting-edge science into practical, easy to use tools for clinicians: For example, PROMIS implements Computerized Adaptive Testing (CAT) software which tailors the PRO assessment to the individual patient by selecting the most informative set of questions based on responses to previous questions. CAT questionnaires allow an accurate measurement of health status using the fewest possible questions

Assessing and expanding PROMIS

From March through November 2012, PROMIS underwent a second round funding review by an independent panel to evaluate whether the goals of the PROMIS initiative are being met. The goals of the current funding phase are to:

  • Develop and validate the existing and new PROMIS domains in the context of clinical studies and clinical care;
  • Ensure PROMIS will be adopted by clinical researchers, consistent with the overall goals of the program (both PROMIS I and II) and;
  • Ensure PROMIS will become a sustainable entity beyond the current funding.

The panel’s conclusions and recommendations are in their final report. This report will be posted on the NIH PROMIS Web site, as well as the PROMIS network’s response to the report.

In November 2012, the PROMIS network held it first international strategy meeting with organizational partners from 8 European countries, China and Canada to develop a strategic action plan for the international spread of PROMIS.[8]

In early 2013, PROMIS unveiled new materials to expand its outreach to researchers and clinicians: the PROMIS e-newsletter[9] and two instructional videos series[10] about PROMIS and IRT on the NIH PROMIS Web site.

Affiliates

The PROMIS initiative is fulfilled by a network of primary research sites and coordinating centers that collaborate to develop the items and tools to measure PROs, and to evaluate the reliability and validity of these measures.[5] Between 2004 and 2009, PROMIS® consisted of a Statistical Center, located at Evanston Northwestern Healthcare, and six research sites located at Duke University, University of North Carolina at Chapel Hill, University of Pittsburgh, Stanford University, Stony Brook University, and University of Washington. In 2010, NIH renewed funding for PROMIS® and expanded the program to six additional research sites: Children’s Hospital of Philadelphia; Boston University / University of Michigan, Ann Arbor; University of California, Los Angeles; Georgetown University; Children’s Hospital Medical Center, Cincinnati; and University of Maryland, Baltimore. PROMIS® also added a Network Center, operated by the American Institutes for Research, Washington DC, and a Technical Center, operated by Northwestern University. These centers provide logistical and technical support to PROMIS®.

Mission

PROMIS® uses measurement science to create a state-of-the-science assessment system for self–reported health.[11]

  • Create and promulgate a set of qualitative and quantitative methodological standards for development and validation of PROMIS® instruments.
  • Launch a sustainable entity that is able to continue and grow the research, development, and dissemination activities for the network.
  • Identify and prioritize a set of research and development opportunities for PROMIS® that include, but are not limited to, clinical applications.
  • Disseminate information on PROMIS® to forge strategic alliances with key individuals and organizations that that will help PROMIS® fulfill its vision and enhance its adoption in research, clinical practice, and policy.

Measures

PROMIS® has self-reported health measures in the domains of physical health, mental health and social health for adult self-reported and pediatric-self and proxy-reported health.[12]

Under each main domain (physical health, mental health, social health) are sub-domains associated with symptoms, function, affect, behavior, cognition, relationships or function. The sub-domains developed as of December 2012 are listed below. Domains that are “PROMIS Profile Domains” are included in either PROMIS Adult Profile Instruments (PROMIS-29, PROMIS-43, PROMIS-57) and Pediatric Profile Instruments (PROMIS Pediatric 25, PROMIS Pediatric 37, PROMIS Pediatric 49).

Adult self-reported health domains

Physical Health
Profile Domains:
  • Physical Function
  • Pain Intensity
  • Pain Interference
  • Fatigue
  • Sleep Disturbance
Additional Domains:
  • Pain Behavior
  • Sleep-related (daytime) Impairment
  • Sexual Function
Mental Health
Profile Domains:
  • Depression
  • Anxiety
Additional Domains:
  • Anger
  • Applied Cognition
  • Alcohol Use, Consequences, & Expectancies
  • Psychosocial Illness Impact
Social Health
Profile Domains:
  • Satisfaction with Participation in Social Roles
Additional Domains:
  • Satisfaction with Social Roles & Activities
  • Ability to Participate in Social Roles & Activities
  • Social Support
  • Social Isolation
  • Companionship

Pediatric self- and proxy-reported health domains

Physical Health
Profile Domains:
  • Mobility
  • Upper Extremity Function
  • Pain Interference
  • Pain Intensity
  • Fatigue
Additional Domains:
  • Asthma Impact
Mental Health
Profile Domains:
  • Depressive Symptoms
  • Anxiety
Additional Domains:
  • Anger
Social Health
Profile Domains:
  • Peer Relationships

References

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External links

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