Spinal Cord Injury Patient Care Changes in Practice and Treatment over the Past 40 Years

Transcription

1 PG 2: Shepherd Center Ranks Among Top 10 in U.S. News & World Report s Best Hospitals PG 3: New Lokomat Database Provides Data to Researchers Worldwide PG 4: Two New Providers Join Medical Staff at Shepherd Center PG 4: Shepherd Center s Recreation Therapy Program Preps for Annual Ski Trip A NEWSLETTER OF SHEPHERD CENTER PROVIDER OF MEDICAL TREATMENT, RESEARCH AND REHABILITATION PG 5: Powered Exoskeleton to Assist Walking PG 6: New Usability Lab Provides Accessibility Testing of Wireless Technologies FALL 2013 Spinal Cord Injury Patient Care Changes in Practice and Treatment over the Past 40 Years By Lesley M. Hudson, M.A. Researchers have made interesting discoveries in animal experiments, but unfortunately, numerous clinical trials have shown no improvements in humans. Basic neuroscience must continue to embrace the long-term goal of finding even a partial cure for SCI. Acute Care After Injury Lesley M. Hudson, M.A. This year, the American Spinal Injury Association (ASIA) celebrated its 40th anniversary as a professional organization with 500 members who work in the areas of spinal cord injury (SCI) research and care delivery. At its annual meeting in Chicago in May, the keynote G. Heiner Sell Lecture was presented by one of ASIA s past presidents, Kristjan T. Ragnarsson, M.D., of the Mount Sinai Medical Center in New York. He delivered a detailed comparison of how patient care has changed between 1973 and the present, much due to the work of ASIA members. The following is an overview of Dr. Ragnarsson s comments. His entire lecture has been published in the journal Topics in Spinal Cord Injury Rehabilitation. The Search for a Cure Neuroscientists have been searching for a cure for SCI and still have little to offer. Researchers debated the role of surgery in the management of SCI during the 1970s. Doctors performed surgery relatively infrequently then, and instead ordered spinal traction with 10 to 12 weeks of bed rest. Recently, it has become common for surgical reduction and spinal stabilization to be done on the same day or within a few days of injury. In general, surgical stabilization is now preferred because it permits the patient to be up sooner and participating in rehabilitation therapy, which will shorten the overall length of the hospital stay. Rehabilitation and Clinical Care When we compare clinical care and patient outcomes 40 years ago to current practice, it is clear that much has improved. Patients enjoy better health, have a greater life expectancy and quality of life, are able to move about more easily, and can better participate in activities they enjoy. Because of improved care, there are fewer medical complications, and both rehospitalizations and death rates have decreased. Paralysis Although there is no cure for paralysis, other ways to restore mobility have greatly increased since the 1970s. Manual and powered wheelchairs remain the standard equipment for locomotion, but are now much better designed and constructed. Functional electrical stimulation (FES) systems exist today, but none have provided the universal answer. Body-weight supported treadmill training (BWSTT) has better outcomes than overground training. Powered exoskeletal systems are being tested and appear to have the potential of permitting ambulation at a lower energy cost. Modern technology has enabled persons with SCI to increase participation in community activities through the use of environmental control systems, computers and voice-controlled devices. Bladder Care Preventing urinary incontinence and complications is still a major goal of SCI care. In the 1970s, an indwelling catheter was usually the treatment of choice for good bladder management. Now, intermittent catheterization begins as soon as possible. Today, there are many different, better designed catheters from which to choose. As a result of modern urinary management, there has been a dramatic decrease in deaths due to urological complications. Continued on Page 7

2 2 Shepherd Center Ranks Among Top 10 in U.S. News & World Report s Best Hospitals By Larry Bowie Shepherd Center was again named one of the top 10 rehabilitation hospitals in the nation in a U.S. News & World Report survey. The rankings are published online at and in print in U.S. News s annual guidebook, Best Hospitals 2013, which was on newsstands in August. Shepherd ranked No. 10 among dozens of hospitals that earned a spot in the magazine s survey of rehabilitation hospitals. Shepherd Center fi rst appeared on the list in Also, U.S. News & World Report announced that Shepherd Center ranked No. 2 in the Atlanta metro area in the magazine s Best Hospitals metro area rankings for and No. 3 in Georgia. These rankings were released simultaneously with the national rankings. Rankings for rehabilitation hospitals are based on nominations among physicians. Physicians are asked to name hospitals they consider the best in their specialty, regardless of location or expense. America s Best Hospitals guide includes rankings of medical centers nationwide in 16 specialties. The ranked specialties are cancer, diabetes and endocrinology, ear, nose and throat, gastroenterology, geriatrics, gynecology, heart and heart surgery, kidney disorders, neurology and neurosurgery, ophthalmology, orthopedics, psychiatry, pulmonology, rehabilitation, rheumatology and urology. A hospital that emerges from our analysis as one of the best has much to be proud of, says Avery Comarow, U.S. News Health Rankings editor. Only about 15 percent of hospitals are recognized for their high performance as among their region s best. Just 3 percent of all hospitals earn a national ranking in any specialty. Shepherd Center Shares new Personal Care Manual and Caregiver Guides as Free ebooks on itunes By Katie Malone Three comprehensive guides covering personal care issues and caregiver basics for people with spinal cord and brain injury and their loved ones are now available free of charge on itunes (search: Shepherd Center). Shepherd Center created these guides, which are required reading for patients and their family members and loved ones in the hospital s Spinal Cord Injury and Brain Injury programs. The Personal Care Manual for people with spinal cord injury (SCI) is considered essential for family members and caregivers to review before discharge. The 181-page manual contains a detailed overview of SCI with topics including how to manage your bowel and bladder program, skin care, respiratory system and medications. Subjects such as emotional adjustment, alcohol and drug issues, assistive technology and other special concerns are also covered. Brain Injury: A Guide for Caregivers and Spinal Cord Injury: A Guide for Caregivers are of interest to people with a loved one or friend who has just experienced a traumatic brain or spinal cord injury. They include tips and advice for the fi rst few weeks following the injury, as well as a practical overview of the injury, a glossary of new terms you may hear and a list of resources that are available to assist you. The newly released ebooks give healthcare consumers unprecedented access to Shepherd Center s educational materials free of charge. View in ibooks or go to itunes and search Shepherd Center. These books require ibooks or later and ios or later. The books can be viewed using ibooks on an ipad, iphone (3G or later) or ipod touch (2nd generation or later).

3 3 New Lokomat Database Provides Data to Researchers Worldwide By Sara Baxter Thanks to a new international collaboration, it s possible that data collected from Shepherd Center patients using the Lokomat robotic gait training system in Atlanta could benefi t people with neurologic conditions such as spinal cord injury (SCI) and brain injury all over the world. Shepherd Center is one of seven rehabilitation centers and hospitals taking part in the ARTIC program, a database coordinated by Hocoma Inc., the makers of the Lokomat. The company, based in Zurich, asked facilities from the U.S., Europe and Asia to contribute data from patients Lokomat therapy sessions to help track how the device affects recovery in people with various neurologic conditions. Shepherd Center is ideally suited to provide data regarding populations with spinal cord or brain injury, stroke, and multiple sclerosis. Data from those sessions will be compiled into the ARTIC system. Researchers believe participation in the ARTIC program will improve the level of care and contribute to the fi eld of rehabilitation research. Ultimately, the goal is to help retrain the user s legs to walk. When using the Lokomat, the patient is suspended in a harness, and his or her legs are placed in robotic leg orthotics capable of assisting with the stepping activity. The Lokomat can perform the stepping pattern entirely for them, or just assist as needed, allowing patients early on in their rehab, a safe environment to practice stepping, says Sandy Alexander, PT, DPT, SCI Research Fellow at Shepherd Center. For the study database, information such as the duration and distance of a patient s therapy session, amount of body weight supported and the force generated by each joint in a certain position will be compiled through the ARTIC system. The data, which will be stored at Spaulding Rehabilitation Hospital in Boston, will then be shared among the participating centers for multiple research initiatives. Data collection began in September. Researchers hope this process will improve the effi cacy of treatment. For example, one center s approach might take fi ve weeks before patients see improvement. With a few tweaks gleaned from the data, a different approach might take only three weeks to progress to the same functional level. We anticipate that ARTIC will help individualize Lokomat treatment in the future, says Leslie VanHiel, PT, DScPT, an SCI Research Program Coordinator at Shepherd Center. With data from other hospitals, we ll learn how to best use Lokomat training to maximize patient outcomes. Aimee Terrill uses the Lokomat in Shepherd Center s Beyond Therapy Gym. Photo by Gary Meek Shepherd Center Listed as a Top 50 Social Media Friendly Hospital for 2013 By Angela Yarnish Shepherd Center was recently named a Top 50 Social Media Friendly Hospital for 2013 by the Advocates for Healthcare Administration Worldwide. Shepherd ranked No. 42 among 50 other U.S. hospitals that have created a buzz with their use of various social media platforms. Rankings for each hospital are based on a number of criteria, including a top-ranked specialty program as rated by U.S. News & World Report and the number of followers and amount of activity on each social platform, to calculate a score total of 100. Sharing the latest medical research on your hospital s blog and social media accounts can help you attract followers and build up buzz for your facility, says a representative of Advocates for Healthcare Administration Worldwide. In addition to keeping consumers informed about breakthroughs being made at your own hospital, you can also monitor peer-reviewed journals for interesting developments and summarize them for your followers. Shepherd Center can be found on several social media platforms, including Facebook, Twitter, You Tube, LinkedIn and Instagram. Connect with us via social media links at

4 4 Two New Providers Join Medical Staff at Shepherd Center By Leo Rubini ChiChi Berhane, M.D., MBA & Teresa Ashman, Ph.D. Shepherd Center has added two new providers to its medical staff. They are plastic surgeon ChiChi Berhane, M.D, MBA, and new Director of Neurorehabilitation Psychology, Teresa Ashman, Ph.D. Dr. Berhane, who specializes in aesthetic and reconstructive plastic surgery, recently began seeing patients in Shepherd Center s wound clinic on Mondays and Wednesdays and performing surgeries at the adjacent campus of Piedmont Hospital on Fridays. Shepherd Center Medical Director Donald P. Leslie, M.D., described Dr. Berhane as a very talented plastic surgeon who will be the principal surgeon at Shepherd Center with our patients with pressure wounds, which can be a complication arising from spinal cord injury. Dr. Berhane completed his plastic surgery residency at the University of Miami Hospital in Miami, Fla., and is a member of several professional organizations, including the American Society of Plastic Surgeons and the American Society of Maxillofacial Surgeons. Dr. Berhane is a two-time winner of the Marshall University Department of Surgery s Resident of the Year Award. He participates in many public service organizations, including Physicians for Social Responsibility and Doctors Without Borders. Dr. Ashman, who joined the Shepherd Center staff on July 15, previously practiced at the Department of Rehabilitation Medicine at both New York University Langone Medical Center and Mount Sinai Medical Center prior to relocating to Atlanta to join the Shepherd Center. In her role she will oversee all neurorehabilitation psychological services for patients as well as continue her extensive clinical research with individuals with traumatic brain injuries. We are extremely pleased to have Dr. Ashman serve our patients in this very important role, Dr. Leslie said. She received a doctorate of psychology from New School University and is certifi ed in rehabilitation psychology by the American Board of Professional Psychology. Dr. Ashman has received prestigious awards such as the Ted Weiss Advocacy Award, the John G. Gianutsos Award and is a two-time recipient of the David Strauss Memorial Award. Shepherd Center s Recreation Therapy Program Preps for Annual Ski Trip By Katie Malone This winter, Shepherd Center s Recreation Therapy program will host its 14th annual adaptive ski trip Feb. 27 through March 4. Former Shepherd Center patients, along with their families and friends, can snow ski at the National Ability Center in Park City, Utah. The fi venight trip includes three days of instruction by the National Ability Center instructors, lift tickets and adaptive equipment rental. The trip is a wonderful experience where people with and without disabilities, at any level of skiing ability, come together to do what they love, says Bri Dickerson, CTRS, a Shepherd Center recreation therapist leading the trip. The cost is $933 for an adaptive skier and includes fi ve nights of lodging, double occupancy and service fees at the Ranch, the National Ability Center s lodging facility, round trip airport transfers, transportation daily to the ski slopes and town, and catered arrival and departure dinners. The fee for companions is $616, and does not include skiing. Neither of these prices includes airfare. For more information, contact Bri Dickerson at or bri_dickerson@shepherd.org. Former patients and family members enjoy adaptive skiing during Shepherd Center s annual Recreation Therapy ski trip. Photo courtesy of Recreation Therapy department

5 A Critical Mission Shepherd Center provides clinical test ground for new device that gives freedom to those with limited mobility. By Amanda Crowe, MA, MPH 5 What s in a name? The team behind a new powered exoskeleton designed to help people with spinal cord injury and other mobility-limiting conditions walk and regain independence will tell you everything. The Indego short for independence and go is living up to its carefully chosen name and could be available to clinical rehabilitation centers in the United States as early as next year thanks to an innovative partnership among Shepherd Center, Vanderbilt University and Parker Hannifi n Corporation, the company that will manufacture the device. Think of it as a Segway with legs, says device inventor Michael Goldfarb, Ph.D., the H. Fort Flowers Chair in Mechanical Engineering and professor of physical medicine and rehabilitation at Vanderbilt. The Indego is worn on the outside of the body, helping users move their legs and allowing them to stand and walk. To go, the wearer leans forward. To stop or sit, they stand upright or lean back. It s extremely intuitive and moves in harmony with the body, says Clare Hartigan, a physical therapist and research coordinator at Shepherd Center. It s also the only device that allows the user to transport it completely by themselves. Folks have been in the device as long as six hours sitting, standing and walking. The Indego has several other inherent advantages over existing lower-extremity exoskeletons, Hartigan says. It easily snaps apart and is compact and lightweight (27 versus 45 pounds or more for other exoskeletons). It is also the fi rst to allow the wearer to vary the degree of robotic assistance applied based on his or her level of function and muscle control. This device will adjust in the same way a physical therapist will interact with a patient differently depending on what that patient needs, Dr. Goldfarb says. So far, the device has been tested by 10 patients at Shepherd Center and with great success. David Carter, 27, of Dallas, Ga., was injured in a 2010 motorcycle accident, which left him with a T-7 complete SCI. After just three sessions with the Indego only two to three hours each he was able to walk by himself using a walker for the fi rst time in two years. It was amazing to stand side-by-side with someone and look them in the eye rather than always looking up at them, he says. It is technology that, in Indego s case, has been developed and refi ned over several years with real-time feedback from clinicians and patients at Shepherd Center. There are also secondary benefi ts associated with the weight-bearing and movement that comes with using a device. For example, users report reduced spasticity and pain, improved bowel/bladder function and better skin health. More recently, clinicians have started testing it on people recovering from stroke. Hartigan says the device has shown such promise that researchers now plan to expand their study from three to 20 subjects with stroke. The device is retraining the way they walk by teaching them to trust their weaker leg, and it seems to be paying off. Shepherd Center is Parker s lead clinical partner. It is the only center with access to the device. In 2014, Shepherd and other select clinical centers will receive the generation-two prototype, and multi-site clinical trials will begin. Shepherd is charged with developing the clinical protocols for using the device, training clinicians at other rehabilitation centers and monitoring clinical trials. Researchers test the Indego powered exoskeleton with David Carter of Dallas, Ga. Photo by Louie Favorite For information about the Indego trials at Shepherd Center, please visit and complete the research intake form at

6 6 New Usability Lab Provides Accessibility Testing of Wireless Technologies Shepherd Center researchers are helping wireless technology engineers ensure that people with disabilities can use consumer wireless technology. By Amanda Crowe, MA, MPH A visually impaired user tests Android s Google Talkback, which provides audio feedback to identify application icons before double tapping to activate. Photo courtesy of Jim Mueller With today s mobile technology, most of us carry a personal computer, telephone, camera, alarm clock, GPS, reference library and even a fl ashlight with us wherever we go. But consider having all that technology with you and not being able to access it. Understanding and easily using today s mobile consumer technology can be a challenge for anyone. But people with disabilities often have greater diffi culty activating and using the myriad of features packed into today s mobile phones, tablets and computers. The need to ensure the accessibility of consumer technology is the reason Shepherd Center researchers established the Interactive Technology Usability and Accessibility Lab (Usability Lab). The power and versatility of smartphones, tablets and other wireless devices have greatly expanded the mobility, social engagement and independence of many people with disabilities, says John Morris, Ph.D., director of Shepherd Center s Usability Lab. At the same time, the rapid expansion in the capabilities of mobile wireless technology creates additional need to ensure that the features and functions of these devices are accessible by people of all abilities. Designers and engineers have developed newer ways for accessing mobile wireless technologies, including voice activation, eye gaze and alternative ways of activating functions by touch. If someone has limited use of their arms, hands or fi ngers, for instance, they can use their voice instead to activate functions and enter information or commands into their device. These innovations and the details of their design require testing with consumers with specifi c disabilities to make certain they are accessible and effective. Accessibility doesn t just happen, Morris says. It takes a determined effort. Consumers need to be involved. The wireless industry understands this now more than ever. Still, the industry often fi nds it diffi cult to engage people with various disabilities who can test consumer products for accessibility. So, they turned to Shepherd Center researchers who maintain a network of consumers with various disabilities as part of the Rehabilitation Engineering Research Center for Wireless Technologies (Wireless RERC), an ongoing research partnership between Shepherd Center and Georgia Tech. The Wireless RERC is funded by the U.S. Department of Education s National Institute on Disability and Rehabilitation Research (NIDRR). Our expertise in consumer research on wireless technologies, combined with our central location in Atlanta, make us uniquely able to help the wireless industry connect with consumers with disabilities, says Ben Lippincott, co-director of Shepherd s Usability Lab. The Usability Lab has conducted six studies for wireless service providers, handset manufacturers and even a non-profi t that developed an accessible application for smartphones. Research often involves focus group discussion for general discovery of user experiences, extended take-home usability studies and one-on-one sit-by testing of specifi c devices and software. By engaging consumers upfront, designers and engineers of these technologies may avoid costly fi xes down the line, Lippincott explains. More importantly, it means these technologies are more accessible at an earlier stage in their development, he adds. Living with a Spinal Cord Injury Tell us what you think in a brief survey! The Spinal Cord Injury Model System (SCIMS) is seeking your ideas on topics for fact sheets for people with SCI and their families. Go to to see the fact sheets that have already been created. Participation in the survey is voluntary and you may stop at any time. All individual information will be kept confi dential. Your name will not be used. To participate, go to: and follow the instructions. Thank you for your help!

7 Continued from front page Spinal Cord Injury Patient Care Changes in Practice and Treatment over the Past 40 Years 7 Sexual Function and Fertility Impaired sexual function and infertility were perhaps the most stigmatizing and feared conditions of males with SCI. With medications, most men with SCI now can have successful intercourse, and modern reproductive technology has enabled up to 74 percent to father children. The fertility of women is not affected by SCI, but their pregnancies are considered high risk. However, if managed properly, most women with SCI deliver healthy babies without jeopardizing their lives. Spasticity Understanding and management of spasticity has improved greatly since the 1970s. There are several scales available to clinicians to measure spasticity, and the condition can now be treated much more effectively with medications that have been introduced in the past 30 years. Pain Pain is still common, diffi cult to treat and has an impact on quality of life. Previously used medications for SCI pain had unwanted side effects, and narcotics were rarely used because they could become addictive. Today, there are better medications available to treat SCI pain with fewer side effects. Narcotics can now be used if prescribed judiciously for persons with low risk of addiction. Pressure Ulcers Pressure ulcers developed almost immediately in most patients 40 years ago with profound effect on quality of life, community activities and general health. They were considered impossible to prevent and were diffi cult to treat effectively. Today, severe pressure ulcers can generally be prevented with frequent pressure relief, position change, skin inspection, and sometimes with the use of special mattresses and seating systems, although superfi cial ulcers still occur in a third of persons with new SCI. Deep Venous Thrombosis and Pulmonary Embolism In the past, incidence of deep venous thrombosis (DVT) occurred in 65 to 100 percent of SCI patients, while pulmonary embolism (PE) occurred in about 20 percent. With improved diagnostic methods, such as ultrasound and prophylactic anticoagulation therapy, DVT now occurs in about 15 percent of patients, while PE occurs in 4 percent. Respiratory and Pulmonary Complications Since the 1970s, the life expectancy of ventilator dependent persons with tetraplegia has increased more than for any other group of persons with SCI. During the 1970s, people with SCI who required mechanical ventilation were rarely seen at rehabilitation centers because most died shortly after their accidents. If they survived one year, their life expectancy was reported to be 4.4 years, compared to 20 years today. Clinicans know more today about the care of ventilator-dependent persons. Clinical care has improved, and equipment is more advanced. In spite of these advances, however, pulmonary complications continue to be the top cause of death in persons with tetraplegia. Challenges for the Future Despite such remarkable progress in clinical care, challenges remain. Research aimed to reverse the neurological loss after SCI must continue. Research using rapidly developing technology and a growing understanding of the healthy nervous system must be supported. The fact that only a third of persons with SCI return to any kind of work or live independently in the community is a continuous challenge. Meaningful funding for both clinical and basic science research must be encouraged. Project Rollway Shepherd Center s Spinal Cord Injury Adolescent Program hosted Project Rollway, a fashion show fundraiser on July 25. More than 20 patients and staff members modeled, rolling and strutting their styles down the runway in the Shepherd Center Gym, raising nearly $3,000 for the teen program. Staff members credit speech therapist Hannah Helton, MSP, CCC-SLP, with the idea to host a fashion show. Pictured: Sherri Butts and Summer Long participate in the fashion show.

8 NON-PROFIT ORG. US POSTAGE PAID ATLANTA, GA PERMIT NO AXIS covers news and information about research, medical treatments, healthy living and events for people who have experienced spinal cord injury, brain injury or a related neurological condition. AXIS is published twice a year. Questions? Call PROJECT DIRECTORS David F. Apple, Jr., M.D. Lesley M. Hudson, M.A. EDITOR Katie Malone, M.S. Supported in part by a grant from the National Institute on Disability and Rehabilitation Research, U.S. Department of Education, Washington, D.C., for the Southeastern Regional Spinal Cord Injury Model System at Shepherd Center in Atlanta, Georgia. Grant # H133N If you would like to make a gift to support the work you have read about, please contact the Shepherd Center Foundation at or visit shepherd.org. Give $5 by texting: SHEPHERD to (messaging and data rules may apply) Shepherd Center Launches its First-Ever Advertising Campaign in Metro Atlanta Area Shepherd Center kicked off an advertising campaign in the Atlanta area in August aimed at creating a strong, local identity for Shepherd Center as the natural go-to choice when seeking expert rehabilitation care for catastrophic spinal cord or brain injury. The campaign runs into November and consists of outdoor billboards, radio spots for AM and FM, print ads, video and social media promotions. The goal of the campaign is to introduce Shepherd Center to general consumers who may not know about Shepherd and its nationally acclaimed expertise, says Larry Bowie, director of public relations and marketing. Now, more than ever, healthcare decisions are made at the consumer level, and we want consumers to know they have choices when deciding upon their best option in rehabilitation care for catastrophic spinal cord or brain injury, Bowie says. As a not-for-profi t hospital, Shepherd Center hopes the ads will also draw in more donors who are moved by the hospital s work, as well as the stories of the people who are treated here.