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Model Systems Program

Purpose

NIDILRR’s Model Systems programs in spinal cord injury (SCIMS), traumatic brain injury (TBIMS), and burn injury (BMS) provide coordinated systems of rehabilitation care and conduct research on recovery and long-term outcomes. In addition, these centers serve as platforms for collaborative, multi-site research, including research on interventions using randomized controlled approaches. The programs also track Model Systems patients over time in large databases.

How to Apply

Highlights

The Model Systems Program Funding Mechanism accounted for roughly 18% of grant funding in FY 2015. This program funding mechanism consists of:

  • 14 Spinal Cord Injury (SCI) Model System Centers and its national data center. The National SCI Database has been in existence since 1973 and captures data from an estimated 13% of SCI cases in the U.S. Since its inception, 28 federally funded SCIMS have contributed data to the National SCI Database. As of October 2015, the SCIMS center has more than 44,280 individuals in its National Database.

  • 16 Traumatic Brain Injury Model System Centers and its national data center. As of October 2015, the TBIMS centers have 14,406 persons enrolled in their national database. The TBIMS National Database includes a large-scale ongoing follow-up of individuals post-injury.

  • 4 Burn Model System Centers and its national data center. As of October 2015, the Burn Model System centers have 5,762 persons enrolled in their national database. The BMS National Database is a prospective, longitudinal, multicenter research study that examines functional and psychosocial outcomes following burns for more than 3,000 adults and nearly 2,000 children.

Takeaway: Studies using these databases have provided an abundance of groundbreaking information over the decades on the social and environmental factors influencing the community living and participation of individuals affected by these injuries, best clinical practices for screening and treatment, physiological aspects of the conditions, and long-term outcomes.

Select Accomplishments for FY 2015

Study Points to Rehabilitation Interventions That Are Associated with Positive Outcomes for People with Traumatic Brain Injury

Ohio State University coordinated a journal supplement that reported the results of the first practice-based evidence study of TBI rehabilitation. The study enrolled 2,205 individuals with TBI who were receiving initial inpatient rehabilitation across 10 rehabilitation centers. The study has resulted in the richest dataset on TBI rehabilitation ever assembled.

The journal supplement included 12 articles, beginning with an introductory article. The studies collectively identified the characteristics associated with patient outcomes, how clinical events mediated outcomes, and treatments used in response to various clinical problems. They further determined the best treatment options, as measured by superior outcomes, accounting for TBI severity and other factors. The analyses reported in the journal supplement are the beginning of an extensive analysis and reporting process. The findings will provide guidance in developing guidelines for clinical decision-making and other evidence-based practices.

The citation for the Journal Supplement is: Horn, S. (Ed.). (2015).What works in inpatient traumatic brain injury rehabilitation? Results from the TBI-PBE study [Supplement]. Archives of Physical Medicine and Rehabilitation, 96(8), S173–S340.

Instrument Proves Valuable for Assessing Function and Functional Change in Individuals with SCI

Assessing the impact of assistive technology (AT) on a person's function is a significant problem that must be addressed when developing a rehabilitation outcome measure. Researchers at Boston University’s SCIMS reported the success of the SCI-FI/AT (Spinal Cord Injury-Functional Index Computer/ Assistive Technology) instrument. The SCI-FI/AT was developed specifically for use with individuals with SCI across all levels and extent of injury (with a sensitivity to changes in function), while also being practical for use in busy clinical settings. The SCI-FI focuses on providing a general measure of function for people with SCI while supporting the use of AT. In doing so, the instrument provides a valuable approach for accurately measuring function and meaningful change in the way that individuals use AT. This instrument allows clinicians to more accurately discuss the functional capabilities of the patient with them and their families.

The utility of the instrument was demonstrated in a recent study: Jette, A. M., Slavin, M. D., Ni, P., Kisala, P. A., Tulsky, D. S., Heinemann, A. W., Charlifue, S., Tate, D. G., Fyffe, D., Morse, L., Marino, R., Smith, I., & Williams, S. (2015). Development and initial evaluation of the SCI-FI/AT. Journal of Spinal Cord Medicine, 38(3), 409–418.

New Tool Measures Quality of Life in Persons with SCI

Researchers at the Kessler Foundation and its Institute for Rehabilitation Research contributed to the development of the SCI Quality of Life instrument. This tool is a measurement system developed to address the shortage of relevant and psychometrically sound patient-reported outcome measures available for clinical care and research into SCI. The system provides an innovative, psychometrically rigorous, and highly useful method that will revolutionize the assessment of self-reported outcomes for persons with SCI. The system builds on the capacity of the rehabilitation research field by providing a valid and reliable means of assessing aspects of health-related quality of life—a key outcome measure for epidemiological and intervention studies of persons with SCI.

The findings relating to this measurement system were published in: Tulsky, D. S., Kisala, P. A., Victorson, D., Tate, D. G., Heinemann, A. W., Charlifue, S., Kirshblum, S. C., Fyffe, D., Gershon, R., Spungen, A. M., Bombardier, C. H., Dyson-Hudson., T. A., Amtmann, D., Kalpakjian, C. Z., Choi, S. W., Jette, A. M., Forchheimer, M., & Cella, D. (2015). Overview of Spinal Cord Injury – Quality of Life (SCI QOL) measurement system. Journal of Spinal Cord Medicine, 38(3), 257–269.

Convenient Checklist Keeps Wheelchairs at Top Performance

Researchers at the University of Pittsburgh developed the Wheelchair Maintenance Assessment Tool (W-MAT), a wheelchair inspection checklist to assess the condition of a wheelchair and its parts. The checklist identifies problems related to component failure in power and manual wheelchairs and serves as a useful risk assessment for the prevention of wheelchair-related injuries. Research has shown that between 44% and 57% of people with SCI have required at least one wheelchair repair in a six-month period and between 22% and 30% of those who needed repairs also reported being stranded; missing appointments, school, or work; or being injured due to this needed repair.

Additionally, lack of maintenance has been linked to a tenfold increase in likelihood of being injured. The W-MAT is designed for a broad audience, increasing its versatility. By improving knowledge of wheelchair maintenance, wheelchair users can more quickly address issues and decrease the number of repairs and accidents. The W-MAT was presented at the 2015 International Seating Symposium Workshop “Basic Wheelchair Maintenance Training for Manual and Power Wheelchair Users.”

The article discussing the tool is currently in press: Toro, M. L., & Pearlman, J. (In Press). Development of a manual wheelchair and power wheelchair maintenance program. Proceedings of the Rehabilitation Engineering and Assistive Technology Society of North American Conference. June 10–14, 2015, Denver, CO.

Contact

Contact Cate Miller at NIDILRR if you have questions about the TBIMS or BMS.

Contact Theresa SanAgustin at NIDILRR if you have questions about the SCIMS.


Last modified on 09/14/2017


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