The PROMIS initiative: involvement of rehabilitation stakeholders in development and examples of applications in rehabilitation research

Abstract

To fully capture the impact of a disease or condition on the lives of individuals, patient-reported outcomes are considered a necessary component of health measurement in rehabilitation. This article provides an overview of the involvement of rehabilitation stakeholders in the development of sound measurement tools for the Patient-Reported Outcomes Measurement Information System (PROMIS), a National Institutes of Health-funded initiative. PROMIS is a multisite study that included many different populations. We focus on the involvement of people with several chronic conditions, including multiple sclerosis, spinal cord injury, and arthritis, in the development of PROMIS measures. We describe both qualitative and quantitative methods used, including expert panels, focus groups, cognitive interviews, and item response theory modeling, which resulted in enhanced utility of PROMIS measures in rehabilitation. Measures include a set of global health items and 12 item banks representing 6 domains. Scores are reported in the T score metric (mean ± SD, 50 ± 10) and centered on mean values from the U.S. general population. The PROMIS item banks measure quality of life and symptoms of people with chronic conditions and have the potential to enhance research and clinical practice by facilitating comparisons of scores across domains and populations.

Figure 1

PROMIS T-scores for a sample of people with MS (N=461) and SCI (N=239) compared to PROMIS U.S. general population scores on PROMIS Short Forms. Above the line, higher scores = better (discretionary roles, social roles, and physical function) and below the line, higher scores = worse (pain interference, sleep disturbance, sleep-related impairment, anger, anxiety, depression, and fatigue).