Future of outcomes measurement: impact on research in medical rehabilitation and neurologic populations

The National Institutes of Health (NIH) has embraced the investigation and development of health-related patient-reported outcomes (PROs) for their potential use in clinical trials, as well as in examining health care reimbursements and regulatory affairs. The NIH has 3 major programs to address this topic: the Patient-Reported Outcomes Measurement Information System (PROMIS), NIH Toolbox for Assessment of Neurological and Behavioral Function, and Quality of Life in Neurological Disorders (Neuro-QOL), a health-related quality-of-life assessment tool for adults and children with neurologic disorders. These initiatives are focused on developing, validating, and measuring aspects of health by using assessment tools that bridge disease type. Given that rehabilitation takes place across a variety of environments with differing levels of specialized equipment and skilled personnel, PROs may provide consistent measures over time and therefore are anticipated to have substantial impacts on the medical rehabilitation community. Despite their advantages, the widespread use of PROs in rehabilitation faces significant and diverse challenges. This article describes the background behind the NIH PRO initiatives and illustrates both potential benefits and challenges to PRO use in the medical rehabilitation setting.