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.

Considering disability and health: Reflections on the Healthy People 2020 Midcourse Review.

The Healthy People 2020 (HP2020) Midcourse Review (MCR) presents an opportunity for professionals in the disability and health field to contemplate preliminary progress toward achieving specific health objectives. The MCR showed notable progress in access to primary care, appropriate services for complex conditions associated with disability, expansion of health promotion programs focusing on disability, improving mental health, and reducing the unemployment rate among job seekers with disabilities. This commentary presents potential considerations, at least in part, for such progress including increased access to health care, greater awareness of appropriate services for complex conditions, and opportunities for societal participation. Additional considerations are provided to address the lack of progress in employment among this population -- a somewhat different measure than that for unemployment. Continuing to monitor these objectives will help inform programs, policies, and practices that promote the health of people with disabilities as measured by HP2020.

National Institutes of Health Research Plan on Rehabilitation: NIH Medical Rehabilitation Coordinating Committee.

One in five Americans experiences disability that affects their daily function because of impairments in mobility, cognitive function, sensory impairment, or communication impairment. The need for rehabilitation strategies to optimize function and reduce disability is a clear priority for research to address this public health challenge. The National Institutes of Health (NIH) recently published a Research Plan on Rehabilitation that provides a set of priorities to guide the field over the next 5 years. The plan was developed with input from multiple Institutes and Centers within the NIH, the National Advisory Board for Medical Rehabilitation Research, and the public. This article provides an overview of the need for this research plan, an outline of its development, and a listing of six priority areas for research. The NIH is committed to working with all stakeholder communities engaged in rehabilitation research to track progress made on these priorities and to work to advance the science of medical rehabilitation.This article is being published almost simultaneously in the following six journals: American Journal of Occupational Therapy, American Journal of Physical Medicine and Rehabilitation, Archives of Physical Medicine and Rehabilitation, Neurorehabilitation and Neural Repair, Physical Therapy, and Rehabilitation Psychology. Citation information is as follows: NIH Medical Rehabilitation Coordinating Committee. Am J Phys Med Rehabil. 2017;97(4):404-407.

Translating civilian and defense technologies for pediatric critical care and rehabilitation research.

A conference sponsored by the National Institutes of Health (NIH) and the Defense Advanced Research Projects Agency (DARPA) titled "Translating Civilian and Defense Technologies for Pediatric Critical Care and Rehabilitation Research" was held on May 16th and 17th, 2005 in Rockville, Maryland. A summary of presentations from the conference is provided. Topics presented addressed: advances in monitoring and imaging devices used in the pediatric intensive care unit, regulatory issues and recent technological developments relating to medical devices for children, the new role that virtual reality is playing in rehabilitation medicine, and the evolving future of assistive devices for rehabilitation.

Enhancing measurement in health outcomes research supported by Agencies within the US Department of Health and Human Services.

Many of the Institutes, Agencies and Centers that make up the US Department of Health and Human Services (DHHS) have recognized the need for better instrumentation in health outcomes research, and provide support, both internally and externally, for research utilizing advances in measurement theory and computer technology (informatics). In this paper, representatives from several DHHS agencies and institutes will discuss their need for better instruments within their discipline and describe current or future initiatives for exploring the benefits of these technologies. Together, the perspectives underscore the importance of developing valid, precise, and efficient measures to capture the full burden of disease and treatment on patients. Initiatives, like the Patient-Reported Outcomes Measurement Information System (PROMIS) to create health-related quality of life item banks, represent a trans-DHHS effort to develop a standard set of measures for informing decision making in clinical research, practice, and health policy.