Virginia C. Crawford Research Institute @ Shepherd Center Annual Report 2013 2013 Inpatient Rehabilitation Admissions NUMBER OF PATIENTS Acquired Brain Injury 456 Spinal Cord Injury 436 Dual Diagnosis 49 (Brain and Spinal Cord Injury) Multiple Sclerosis and Other 51 Neuromuscular Diseases TOTAL 992 2013 Outpatient Visits NUMBER OF PATIENTS Medical Specialty Clinics 2,747 Multiple Sclerosis Institute 2,152 Shepherd Pain Institute 1,186 Assistive Technology Center 1,560 TOTAL 7,645 VIRGINIA C. CRAWFORD RESEARCH INSTITUTE shepherd.org/research Dear Colleague, hope you enjoy the 2013 Annual provide for patient/family needs, and dis- Report of Shepherd Center’s tance makes it difficult to provide hands-on I Virginia C. Crawford Research assistance with the transition home. Institute. The year witnessed In 2012, the Shepherd Center leadership continued growth of our research program team established a major strategic objective and further integration of research into to retool our discharge and transition support clinical practice here at Shepherd Center. services. A team of hospital leaders, direct Of particular note, and highlighted in the line staff, researchers, and former patients 2013 Report, is a new initiative to reshape our and family caregivers was assembled to discharge planning and transition services for coordinate work on this strategic objective. patients completing initial rehabilitation after We began with a critical examination of our spinal cord or brain injury. Reducing the num- discharge process, including detailed input ber of avoidable hospital readmissions has from patients and families about the import- become a national healthcare priority. This is ant elements of discharge planning assistance a challenge for our patients because of their and post-discharge supports. complex and often life-threatening support This work culminated in several strategic needs. Adding to the challenge is the broad objectives related to: restructuring our geographic area from which our patients are patient and family education program; drawn. Communities vary in the ability to expanding our involvement of patient and CONTINUED ON NEXT PAGE (Clockwise starting in back row): Lesley Hudson, MA, Deborah Backus, PT, Ph.D., Ron Seel, Ph.D., Julie Gassaway, RN, MS, Issi Clesson, RN, MSCN, CCRP, Mike Jones, Ph.D., and David Apple, M.D. 2013 ANNUAL REPORT 1 CONTINUED FROM PAGE 1 family peer mentors in patient education, dis- associated with this new initiative. An expert charge planning, and support post-discharge; in medical research and rehabilitation, Julie implementing a patient and family web spent more than two decades at the Institute portal to provide ongoing access to informa- for Clinical Outcomes Research, a division tion and support for the transition home; and of the International Severity Information providing more hands-on support for our Systems (ISIS) in Salt Lake City, Utah. Most brain injury patients, who pose a particular recently, she worked as the project manager safety risk at discharge. for the Spinal Cord Injury Model Systems’ All of these objectives are intended to SCIRehab project funded by NIDRR. instill greater competence and self-confi- We had the privilege of working with Julie dence in our patients and families that they on the SCIRehab project, so I was thrilled can effectively deal with problems that may when she agreed to join our staff as the new emerge post-discharge. director of health and wellness research. Her We have been fortunate to obtain external unique skill set as a clinician and researcher, funding to support development and evalua- her patient-centered perspective and highly tion of the system change efforts needed to supportive collegial style will benefit both achieve these objectives. A generous gift from our research program and Shepherd Center the Robert W. Woodruff Foundation will cover as a whole. Please enjoy this year’s report the implementation costs of these change of research accomplishments and join us in efforts,1996 and grants from515,000 the Patient-Centered welcoming Julie to the team! 1997 745,000 Outcomes1998 Research Institute921,000 and the National Institute1999 of Disability1,003,000 and Rehabilitation Research2000 (NIDRR) will1,373,000 support research to val- Kind regards, 2001 1,933,000 idate empirically2002 the1,957,000 impact of these changes on patients’2003 discharge1,308,000 outcomes. This year’s report 2004includes stories1,697,000 describing both of 2005 1,954,000 these new2006 grants in 2,019,000greater detail. We 2007have also had2,045,000 the good fortune to Michael L. Jones, Ph.D. 2008 2,619,000 add Julie2009 Gassaway,2,450,000 RN, MS, to our staff to Vice President of Research and Technology direct 2010the research and3,690,000 development effort 2011 2,900,000 2012 2,400,000 2013 3,200,000 EXTRAMURAL FUNDING (1,000’S) 4,000,000 3,000,000 2,000,000 AMOUNT 1,000,000 0 1996 1997 1998 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012 2013 YEARS 2 VIRGINIA C. CRAWFORD RESEARCH INSTITUTE shepherd.org/research 2013 Accomplishments CRI continued or initiated 18 externally > Evaluation of an Improved Method to funded research projects (current year Assess and Follow the Recovery of Motor funding noted) totaling approximately $3.2 Control in SCI, NIDRR, $128,000. million. An additional grant of $1.25 million > Examination of Human Spinal Circuits, VA, was provided by the Robert W. Woodruff $233,600. Foundation to support system changes that will be evaluated in new research studies. > Mobile Phone Usability Studies, Samsung Corporation, $100,000. > Georgia Regional Spinal Cord Injury Model System of Care, National Institute on > Fitness to Drive in People with Multiple Disability and Rehabilitation Research Sclerosis, National Multiple Sclerosis (NIDRR), $483,499. Society, $55,811. > Benefits Planning, Outreach and > Patient Centered Approach to Community Assistance Program for SSDI Beneficiaries, Transition after SCI, Patient Centered Social Security Administration, $300,000. Outcomes Research Institute, $483,826. > Rehabilitation Engineering Research > The Safe@Home Community Transition Center on Wireless Technologies, NIDRR, Program for TBI, NIDRR, $200,000. $496,530. > Employment of Individuals with > Evaluation of a NeuroRecovery Network Disabilities, NIDRR, $45,508. (NRN) for Functional Improvements > Systematic Assessment of Caregiving after SCI, Christopher Reeve Foundation, Skills, DOD, $38,991. $50,000. > Evaluation of the CUE-T Assessment Tool, > Muscle Plasticity, Fitness and Health after Craig H. Neilsen Foundation, $5,000. Spinal Cord Injury, NIH, $86,853. > Research and Training Center on Secondary Conditions in SCI, NIDRR, Medical University CRI is conducting 20 clinical trials sponsored of South Carolina, $46,000. by pharmaceutical and biotechnology com- panies. More than 500 research participants > I-Step Long Leg Orthosis Validation Study, were enrolled, and CRI studies generated an Vanderbilt University, NIH, $100,000. estimated annual revenue of over $867,000. > Obesity/Overweight in Persons with Early and Chronic SCI: A Randomized, Shepherd Center staff made more than Multicenter, Controlled Lifestyle 70 presentations at professional meetings Intervention, University of Miami, US and conferences and published 26 articles Department of Defense (DOD), $162,184. in refereed journals during 2013. More than 50 clinical staff participated in these research > Comparison of Robotic Locomotor and knowledge translation efforts. Training and Aquatic Therapy in Chronic Motor Incomplete Spinal Cord Injury, University of Maryland, DOD, $168,787. 2013 ANNUAL REPORT 3 PHOTOS BY LOUIE FAVORITE Readying Patients and Families for the Realities of Returning Home New project aims to ease transition, lower hospital readmission rates and boost self-confidence. BY AMANDA CROWE, MA, MPH or many people recovering from For example, they might still need a feeding spinal cord injury (SCI), return- tube, respirator or catheter. Patients and F ing home is a major milestone. caregivers also need to be equipped with the But it is not always an easy one. know-how to guard against infections and Suddenly finding themselves outside of other problems, including strategies to man- Shepherd Center’s structured and support- age their bowel and skin health. Knowing ive environment can be daunting for many what to look for and being able to effectively patients and families – despite the hands-on problem-solve is critical. tutorials and education they receive during What’s interesting is that while patients their stay. may have the information and even the “Patients feel good about going home, skills to care for themselves by the time they but when they get there, they often feel are ready to go home, they may not feel overwhelmed,” says Mike Jones, Ph.D., vice confident making decisions independent of president of research and technology at their treatment team, Dr. Jones explains. He Shepherd Center. “They not only have their likens it to the anxiety that can set in for new injury to contend with, but also the pres- parents when they bring a newborn home sures of daily life, and they are hit with the from the hospital. For the first time, no one is realization that they can’t do everything they around to help coach them, or reinforce their used to do.” decisions about how to best care for this new To add more complication, most people life. For people with SCI, feeling ill-prepared with SCI have complex medical and care can lead to return visits to