SCIORG Newsletter A newsletter of research activities and implications for participants of SCI Outcomes Research FALL 2009 SPINAL CORD INJURY OUTCOMES RESEARCH GROUP (SCIORG)
CHORCUP Summer Student Wins Research Award! The Center on Health Outcomes Research and Capacity for Underserved Populations with SCI and TBI (CHORCUP) is funded by the National Institute on Disability and Rehabilitation Research (NIDRR - #H133A080064)for a fiveyear period (2008-2013). Our undergraduate student from Spelman College, Bridget Peters, presented her summer research project at MUSC's student research day this past Friday, November 6. Out of hundreds of summer student presentations, Bridget won first prize in the health disparities award division for her project, "Prevalence of Pressure Ulcers After Spinal Cord Injury and Relationship to Socioeconomic Conditions." Bridget received a plaque and monetary award for her success. Great job Bridget!
Inside this issue:
Page
CORCUP Summer Students!
1
SCI Research Grant Awarded
1
Consumer Advisory Panel
2
Family, Travel and Community : A Conversation with John Schatzlein
3
Study Updates
3
Post-injury Employment
4
Interviews for study 1 have continued and 84 total interviews (57 SCI and 28 TBI) have been conducted thus far. We are dedicating more time on our team to the interview process which will increase the rates of interviews and finding lost participants in the study that we need to interview. We expect overall number of interviews completed to multiply steadily in the next few months.
Our two graduate students from SCSU have been accepted to participate in a round table discussion at the Association for Advancement of Educational Research Conference which will take place in November 2009 in Stuart, Florida. The students will be traveling with their mentors and our collaborators from SCSU to the conference where they will present their research findings on TBI and SCI from their summer and fall studies. We are very excited that our students will be able to share their work with the conference attendees, and also take part in other conference activities! During their internships, all three students made a large contribution to our center capacity building efforts, as they were able to find and create a database of contact information for minority organizations and universities. We will utilize this contact information throughout the entire grant time line to send our findings and research to interested parties.
Checkout our CHORCUP Website: www.musc.edu/chp/chorcup CHORCUP blog: sciandtbiresearch.blogspot.com
S p in a l C or d I n ju r y R e s e a rc h G ran t Awa rd e d to M U S C ! The article below was published in the local Charleston, SC newspaper, Post and Courier, on Tuesday, October 27. Dr Jim Krause was awarded a five year RRTC grant from NIDRR, set to begin this month. The Medical University of South Carolina's College of Health Professions will receive $3.9 million over five years for research on spinal cord injuries, specifically on life-threatening secondary health conditions
such as pressure ulcers, urinary-tract infections, amputation, fractures and depression. The U.S. Department of Education's National Institute for Disability and Rehabilitation Research will give funds for a grant requested by MUSC researcher Dr. James Krause. MUSC will collaborate with the Shepherd Center in Atlanta and Rancho Los Amigos National Rehabilitation Center in Downey, Calif. "The ultimate goal (of the collaboration) is to reduce the incidence of secondary conditions (Continued on Page 2)
SCIORG NEWSLETTER
C on s u m e r A dv is o r y Pa n e l P rov i d e s U s I n s ig h t ! Our team held a Consumer Advisory Panel (CAP) meeting at MUSC on August 20, 2009. Discussion topics included an overview/update of current studies, dissemination methods, and a viewing/ feedback of two new You Tube videos on employment and depression .
―All participants agreed that using You Tube videos is an ideal method of reaching consumers assuming they have internet access.‖
transferring, UTI prevention, proper skin maintenance/ pressure sore prevention, cooking and hiring/managing a personal care attendant. In addition, all participants agreed that sports and recreation videos would also be an excellent way to provide peer support to show what is still possible after SCI. It was noted that minorities are All participants agreed that less likely to have internet acusing You Tube videos is an cess due to lack of financial reideal method of reaching consumers assuming they have sources and computer operation internet access. Several in the knowledge. group expressed that they All participants agreed with the would have benefitted tremen- findings of the employment dously early in their recovery video and that employer process if they had access to education is also crucial some 'how to' videos which (especially in this economy) in covered topics such as order to break the stereotyping
of people with SCI and get employers to focus on benefits of that potential SCI employee as a person and not a money drain for the company due to money needed for accommodations and potential liability. All agreed that it is crucial for minorities to obtain more education in order to provide more opportunities to work. In watching the depression video, all CAP participants found the relationship of income and education to the amount of depression very interesting. Several folks expressed that the severity of the injury is also a significant factor in depression, as well as relationship status (or the lack of a relationship) and income.
(SCIORG) You Tu be Vi deos to Ch eck SCI Grant Awarded to MUSC (Continued from page 1)
and to enhance longevity after SCI through a combination of research that identifies prominent risk factors for diminished health and by educating health professionals, service providers and individuals with SCI on how to implement appropriate prevention strategies," said Krause.
PAGE 2
We have posted three new You Tube videos in the past few weeks on the Internet. They can be found at the following link:
months on a variety of research topics related to spinal cord injuries including secondary conditions, health, work after SCI, and access to health care.
http:// www.youtube.com/user/ chorcupsci
All three videos are presentations by Dr. Jim Krause on research findings, including earnings and SCI, employment Post and Courier article and SCI, and depression and link: SCI. They are very informative http:// and will give consumers and www.postandcourier.com/ professionals more information news/2009/oct/27/spinal-cord -injury-research-grant-awarded- on our team's research. We are going to be posting many to-musc// more videos over the coming
Checkout our SCIORG website: http://www.musc.edu/chp/ sciorg
FALL 2009
F a m ily, Trave l a n d C om mu n i ty ! A C onve r s a ti on w it h Joh n S c h atz le i n I recently spoke with John to get his impressions what it is like to live with a SCI. John expressed in a friendly voice that ―life is an adventure.‖ He attributes his success in life to his solid upbringing, a strong work ethic, and since 1968 the love of his wife Helen and his girls Melissa and Erica. John’s injury (T5 complete) occurred in May 1963 when he fell 55 feet out of a Cottonwood tree while visiting the family farm. He was 14 years old and spent the next 9 months in the hospital. John soon began to realize that accessibility was going to be a significant part of his life. His choice of both high school and college was determined by the accessibility of the campuses. John met his wife, Helen, while a freshman at Southwest Minnesota State University. He obtained his BA, Psychology, in 1971 and a MPH, from the University of Minnesota in 2000.
allows me to be involved in shaping a new life — it is especially touching when he holds my finger as he walks .‖ John’s other passions include travel (has been to 42 states and six countries), sports and outdoor recreation. He has played many sports since his injury from trap shooting and basketball to scuba diving, table tennis and sled hockey. In 1998, John and three other hockey enthusiasts are credited for starting the first sled hockey team in Minnesota. He is quick to point out that sled hockey became a Para Olympic sport in 2002.
As our conversation was wrapping up, John relayed a humorous story of his 1978 trip to England/Scotland/Wales with his wife which sums up my first impression of him. The rental car company would not rent a car to him due to his disability. However, his wife pulled the car As a paraplegic of 46 years, he has experienced over to the side of the road once she drove out of over four decades of change related to disability in the rental car company parking lot. John rigged the community. Professionally, he has worked in up some hand controls and they drove into the the rehabilitation field for thirty-four years and beautiful British countryside –camping and also has vast community experience with local, exploring the historical sites. When it was all state and national boards and committees as a said and done, John had driven over 1000 miles. participant, advocate, and policy shaper. I would say that John is good natured person who does not take no for an answer. If there is a He has been married 39 years and has two way to get something done, he will find it. Keep daughters and one grandson. For John, family is smiling John. ~ Richard Aust the foundation of his life. ―Being a grandfather
―Being a grandfather allows me to be involved in shaping a new life — it is especially touching when he holds my finger as he walks .‖
~ John Schatzlein
Ongoing Researc h Updates! We are currently are in the data collection phase of Study 1: “Risk of Adverse Outcomes after SCI: A Longitudinal Study,‖ and Study 2: ―A Longitudinal Study of Risk for Hospitalization, Pressure Ulcers, and Subsequent Injuries after Spinal Cord Injury.‖ These studies will help rehabilitation professionals better understand how SCI impacts everyday life and will provide a basis for the development of more effective programs for participation and quality of life after SCI. To date we have received over 2200 completed surveys from
participants. In addition, we are in the data collection phase of the study, ―Participation, Subjective Well being, Health, and Spinal Cord Injury: A 35-year Longitudinal Study.‖ This study is the longest running study of its kind and will continue to provide valuable insight into the patterns of what is occurring post-injury in the areas of secondary conditions, health, and quality of life issues. To date we have
received over 900 completed surveys from participants. Conference Presentations: September 23-26, 2009, Congress on SCI Medicine, Dallas, TX Oral presentation: Self-report Measurement of Depressive Disorders after Spinal Cord Injury: Comparison of the Patient Health Questionnaire and the Older Adult Health and Mood Questionnaire. Poster presentation: Delayed Entry into Employment after Spinal Cord Injury: Factors Related to Time to Work.
PAGE 3
DR. JAMES S. KRAUSE MUSC-College of Health Professions Department of Health Sciences and Research 77 President Street, Suite 117 MSC 700 Charleston SC 29425-7000 Toll-free number: 1-866-313-9963 Fax: 843-792-5649 E-mail: krause@musc.edu
Post-injury Employment after SCI Our research is always focused on improving the lives of people living with SCI. One of the ways we can do this is by providing crucial information to life planners who wish to maximize employment outcomes. It can be very difficult for some groups to find employment after their injuries. In fact, individuals with a high level injury and without a high school diploma, show employment rates as low as 1.4%. However, our research indicates that the most effective tool in equalizing employment opportunities is education. What’s interesting is that not all levels of injury require the same amount of education to achieve similar outcomes. For people with lower level injuries, including paraplegia T1-S5 injuries, a 2-year Associates Degree can be quite effective for increasing employment rates. For this group, a two year degree seems to achieve nearly the same employment rates as a Masters Degree: roughly 60%. On the other hand, for the high level injury group (C1- C4) , an Associates Degree will only result in a 22% employment rate; but, if this group goes on to acquire a Masters Degree, they reach the same 60% employment rate as any other group at this level of education. Indeed, education appears to be the great equalizer, as even the most severely injured can reach the same employment out-
comes once they achieve a masters degree. While this level of education may not be necessary to ensure employment for lower levels of injury, it seems critical for life planners to encourage a Masters Degree or more for C1-C4 injuries, in order to maximize employment opportunities.
Websites To Check Out! South Carolina Spinal Cord Research Fund: www.scscirf.org Disability Information and Resources: www.makoa.org SCI Information Network: www.spinalcord.uab.edu National Spinal Cord Injury Association: www.spinalcord.org SCI Information Pages: www.sci-info-pages.com Shepherd Center: www.shepherd.org