Gaylord Hospital has partnered with Boston Medical Center to become one of only 14 Model Spinal Cord Injury (SCI) Model Centers in the country, and is working to develop a New England standard of care designed to improve functional outcomes. Known as the New England Regional Spinal Cord Injury Center (NERSCIC) at Gaylord Hospital in Wallingford, this collaborative project carries a mark of distinction among providers involved in spinal cord research, since the federally designated Model System is awarded a 5-year grant from the National Institute on Disability and Rehabilitation Research (NIDRR) through a highly competitive process. The total number of centers in this grant cycle, in fact, decreased from 16 to 14.
Gaylord Hospital and Boston University (the NERSCIC) joins the following13 centers:
• University at Alabama
• Rocky Mountain Regional Spinal Injury System in Colorado
• National Capital SCI Model System in Washington, DC
• Georgia SCI Model System in Atlanta, GA
• Midwest Regional SCI Care System in Chicago, IL
• University of Michigan SCI Care System
• Northern New Jersey Spinal Cord Injury System
• Mount Sinai SCI system in New York City
• Northeast Ohio Regional SCI in Cleveland, OH
• Regional SCI Center of the Delaware Valley in Philadelphia, PA
• University of Pittsburgh Model Center
• Texas SCI system in Houston
• Northwest Regional SCI system in Seattle, WA
The Spinal Cord Injury Model Systems program was established by the Rehabilitation Services Administration in the early 1970s. The Model Systems are specialized programs of care in SCI which gather information and conduct research with the goal of improving long-term functional, vocational, cognitive and quality of life outcomes for individuals with SCI.
The mission of the Model System is to embody a vision of a comprehensive, interdisciplinary service delivery system in which the finest talents work with the person with SCI to achieve his or her maximal potential. Gaylord’s inclusion in this prestigious network of centers speaks to Gaylord’s reputation, experience and expertise in the care of people with spinal cord injury.
Inclusion in the Model System allows Gaylord Hospital to offer people with spinal cord injury the opportunity to participate in a national program of data collection. The program currently captures approximately 13% of individuals who have recently experienced spinal cord injuries in this country, and has more than 100,000 participants who are up to 30 years post injury. This allows Gaylord Hospital to contribute data to a national statistical center, which is currently located at the University of Alabama at Birmingham. Here, staff tracks the long-term consequences of spinal cord injury and assesses, identifies and evaluates many factors, such as:
• trends
• causes of injury
• socio demographics
• health services delivery
• treatments
One can see examples of this information by looking at the SCI Facts and Figures at www.spinalcord.uab.edu. Also visit the National Spinal Cord site at www.spinalcord.org . This site averages 81 visits a day, and has been ranked first among 1,010,000 sites by Google™.
Published information, based on the research includes, includes nearly 400 papers at conferences over the last five years, a Model SCI book reviewing the outcomes, and many articles in peer review journals. Specific life expectancy estimates, using the data, are used in an average of 32 court cases each year. At Gaylord, the opportunity to participate as an inpatient and outpatient is offered. To be eligible, one must sustain a traumatic spinal cord injury, and be admitted to and receive care in at least one component of a Model SCI system, such as Gaylord, within one year of the injury.
The Model Systems Knowledge Translation Center (MSKTC) is a part of the Model Systems that summarizes research, identifies health information needs and develops systems for sharing information for the traumatic brain injury, spinal cord injury and burn model programs. It is currently coordinated by the University of Washington in Seattle. Projects are now well underway, including:
• systematic reviews regarding best practices and treatments
• identification of health information needs of different users with a goal to develop products to meet those needs
• the creation of a centralized web-based knowledge management system of Spinal Cord Injury, Traumatic Brain Injury and Burn Model Systems resources to share evidence based health information
The National Consumer Advocacy Board, which is a collaborative effort to promote and provide input on the research being conducted, disseminates information to the spinal cord injury community and t addresses policy issues affecting the spinal cord injury community. Work is now underway regarding issues related to policy, communication and research.
Gaylord Hospital, and the other Model Systems, conduct research in the areas of medical rehabilitation, health and wellness, service delivery, short- and long-term interventions, and systems research. Each center is involved in three areas of research:
1) contribution to the National SCI database- both enrollment and follow up
2) site specific research which is carried out within each center, and
3) module projects which are collaborative research projects involving several SCI Model Systems
Gaylord works closely with their Boston Medical Center colleagues in these three facets of SCI research. The National SCI database work continues, and going well.
A new project for the team involves using Computer Adaptive Testing to improve our ability to functionally monitor after SCI. Five other Model Centers (University of Michigan, Rehabilitation Institute of Chicago, Craig and Kessler) have joined our effort in this. Our goal is to develop a prototype of a tool which will be precise, accurate, and easy for clinicians to use. The study is approved by Gaylord’s IRB (Investigational Review Board), and we have started work on creating a functional item pool, with plans to field test the items, develop and test a prototype tool, and conduct a pilot study. Recruitment for this study has started.
Another research project is designed to evaluate a “virtual visit” for people with SCI and Multiple Sclerosis. Using an interactive, automated “smart” computer controlled telephone conversation system, a digital voice interacts with the caller. The calls, lasting 2-30 minutes each, are designed to monitor potential problems, to communicate relevant information to research workers, and to help clinicians improve people’s health.
This technology has proved helpful in diseases such as hypertension, diabetes, depression, emphysema, and congestive heart failure, but it is the first time the technology has been applied in a rehabilitation perspective for people with MS and SCI. It is also the first time that the system has been set up to include recorded clips from patients discussing topics of interest and their experience. Working with many clinicians at Boston Medical Center, Gaylord Hospital, and other experts to create modules, the project’s focus is on reducing incidence of pressure sores, reducing severity of depression, and improving access to health care. This randomly controlled study starts this month, and is open to people who:
• have SCI or MS
• live at home
• use a wheelchair for 6 or more hours each day
• have access to a telephone for the next six months
• do not have a deep wound
Interested individuals should call Kelsy Dicker at 617-638-1996 or toll free at 866-785-7040 to get further information and to be screened for eligibility.
Other Model SCI centers are working on projects, such as:
• Effect of Nicotine on SCI pain (Birmingham, AL)
• Long term Respiratory complications of SCI (Pittsburgh, PA)
• Capabilities of Arm and Hand in Tetraplegia (Philadelphia, PA)
• Botulinum toxin A treatment of Detrusor External Sphincter Dyssnergia during early SCI( Houston, TX)
Dr. David Rosenblum, director of spinal cord research at Gaylord Hospital, is working with Dr. Williams, chairman of the Department of Rehabilitation Medicine at Boston Medical Center, Dr. Jette, director of BU’s Health and Disability Research Institute and chair of the Institute of Medicine’s Project on Disability in America, and Bethlyn Houlihan MSW, MPH, Senior Project Manager for NERSCIC. Gaylord Hospital’s involvement in the research projects is aided by Diane Mangiero and two additional research nurses, Jean Simpson and Edith Walker.
If you have any questions, please contact Dr. Rosenblum at 203-741-3348.