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PROMIS In Research

PROMIS In Research

The Patient Reported Outcome Measurement Information System (PROMIS) provides access to both adult and child patient–reported measures of symptoms, such as pain and fatigue, and aspects of health–related quality of life. The PROMIS initiative is part of the NIH goal to develop systems to support NIH-funded research supported by all of its institutes and centers. | PROMIS in Research

PROMIS measures cover physical, mental, and social health and can be used across chronic conditions. Each domain measure has undergone rigorous qualitative and psychometric evaluation and refinement through studies with patients with the goal to enable clinicians and researchers to have access to efficient, precise, valid, and responsive indicators of a person’s health status. These measures are available for use across a wide variety of chronic diseases and conditions and in the general population.

How to use PROMIS In Research

PROMIS measures can be used in clinical, observational, comparative effectiveness, health services and health policy research.

  • Clinical research: PROMIS data can be primary, secondary or exploratory endpoints in clinical trials of interventions. For example, one could design a study of the effect of drug therapy on PROMIS Pain Interference scores.
  • Observational research: PROMIS measures can be predictors, mediators, moderators or outcome variables in models designed to describe systems affected by, and affecting health. For example, PROMIS scores collected at time one could be used to predict mortality or morbidity rates 5 years hence.
  • Active study example: PROMIS as a measure of outcome in an observational study of heart transplant patients
  • Comparative effectiveness research: PROMIS measures can be used as indicators of the effectiveness of an intervention. An example would be to compare the case–mix adjusted PROMIS Social Functioning scores for two groups of patients defined by two different types of treatments of the same disease.
  • Active study example: Sensitivity of PROMIS measures to detect change due to therapy for depression and sleep disorders
  • Health services research: PROMIS measures can be used to compare the health outcomes of patients treated under different healthcare delivery systems or providers. To illustrate, patients cared for in Medical Homes could be compared to those cared for in traditional fee–for–service on their case–mix–adjusted PROMIS profile scores.
  • Health policy research: When PROMIS measures are included in national surveys or in a survey of a random sample of the population, casemix–adjusted scores could be used to describe variations in health or disease burden for that population.

The Assessment Center is an online research management tool that can be used to collect PROMIS data. The system enables researchers to create study-specific websites for capturing participant data securely. Studies can include measures within the Assessment Center library as well as custom instruments created or entered by the researcher. Any PROMIS measure can be downloaded for administration on paper or be included in an online study.

The Assessment Center enables customization of item or instruments (e.g., format, randomization, skip patterns), scoring of short forms and computerized–adaptive tests (CATs), storage of protected health information in a separate, secure database, automated accrual reports, data export, graphing of scores, and the ability to capture endorsement of online consent forms.

Visit the PROMIS In Research website

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