SCIORG Research Participant Newsletter VOLUME1, ISSUE 2
A newsletter of research activities and implications for study participants in SCI Outcomes Research
WINTER 2009
SCI Outcomes Research: Topics and Implications for Individuals with Spinal Cord Injuries
Scientific director inducted into Hall of Fame On November 17, 2008, James Krause, Ph.D. was inducted to the National Spinal Cord Injury Association Hall of Fame. One of 17 selected to receive the top honor for SCI contributions, Krause joins such notable inductees as U.S. Sen. Edward Kennedy, actor/ comedian Robin Williams and former Citadel football player, Marc Buoniconti. He redirects any praise for an outstanding individual achievement by stressing that it is the countless study participants who make his work possible. Dr. Krause, associate dean for research (College of Health Professions), has been involved in quality of life after SCI research for over 20 years and is currently overseeing the 35th year of follow-up in one of the largest and longest running longitudinal studies of persons with SCI. His interest in SCI research began after receiving treatment for his own SCI (quadriplegia) as result of a diving accident in 1971. Inside this issue:
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The Hall of Fame induction is the capstone of several recent awards that acknowledge the importance of the SCI research conducted by Dr. Krause and his colleagues. His other honors include: Patricia McCollom Memorial Research Award (1st ever awarded) from the Foundation for Life Care Planning Research for career contributions of research widely utilized in life care planning. National Association of Rehabilitation Research and Training Centers (NARRTC) Research Award (1st annual award), awarded for the outstanding manuscript published in a peer-reviewed journal by a NIDRR grantee during the calendar year 2007. American Spinal Injury Association (ASIA) Research Award (1st annual award) awarded for the outstanding manuscript published in a peer-reviewed journal by an ASIA member in 2006
How will increasing my 2 education affect my chances
The Spinal Cord Injury Outcomes Research Group (SCIORG) Consumer Advisory Panel Provides Us Insight
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Maintaining longevity: Finding purpose in life
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Ongoing Research Updates!
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Websites to checkout!
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SCIORG is founded and led by Dr. James Krause at the Medical University of South Carolina (MUSC), Charleston, SC. The goal of SCIORG is to improve the quality of life after spinal cord injury through the design, data collection, analysis, dissemination and utilization of SCI outcomes research. This research addresses different outcome areas
including employment, secondary health conditions, quality of life, mortality, and the dynamic relationships related to change and aging. Check out our website: www.musc.edu/chp/sciorg
SCIORG RESEARCH PARTICIPANT NEWSLETTER
“ So many of our DREAMS at first seem Impossible, then they seem Improbable, and then when we Summon the Will, they soon become Inevitable.� ~Christopher Reeve
Our introductory newsletter! This is the first in a series of mailed newsletters that are intended to help us share our research findings with our current/former participants and others who have a vested interest in SCI. Our research program goes back 35 years to when it was first started by Dr. Nancy Crewe. The program has grown over the years and has been supported by numerous federal grants, as well as some state fund -raising and occasional grants from other organizations. There is no single focus to our research, other than we have
investigated different facets of outcomes among people spinal cord injury and other disabling conditions. The goal of our research is always to help us better understand the life situation of our participants and to identify factors that may be used to promote better outcomes. In our newsletters, we will summarize some of the primary findings from our studies. Our findings are intended to inform those who read the newsletter. You may or may not find any particular set of findings
applicable to your own situation, but we hope that some of our findings are of benefit to our readers. We will cover various topics from initial adaptation upon returning home to the community, employment, aging, maintaining health, and survival. The newsletter is also a way of thanking you, our participants, not only for helping us with our research, but sharing your experiences in a manner that can help others with SCI.
How will increasing my education affect my chances of working? Education is the single most important factor in determining whether somebody will work after SCI, in most cases. The first figure shows the relationship between education and current employment. Although it is easy to see how increasing education makes a difference, the severity of your injury is also important. The second figure also shows the
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percentage of people employed for different levels of education, but has separate lines depending on severity of the injury. People who are ambulatory are much more likely to work if they have obtained the equivalent of a two-year degree. The situation is similar for people who have thoracic or lumbar injuries (paraplegia). For people with
cervical injuries, it takes at least a four-year degree before the overall percentage of people that are employed begins approaching that of those with less severe injuries. Over half the participants in this study who had C5-C8 injuries and had a bachelors degree were working.
Over half the participants in this study who had C5-C8 injuries and had a bachelors degree were working.
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*ASIA D is the American Spinal Injury Association grade of highly incomplete injury with high degree of voluntary movement Data taken from: Krause, J. S., Kewman, D., DeVivo, M. J., Maynard, F., Coker, J. L., Roach, M. J., & Ducharme, S. (1999). Employment after spinal cord injury: An analysis of cases from the model spinal cord injury systems. Archives of Physical Medicine and Rehabilitation, 80, 1492-1500.
VOLUME1, ISSUE 2
Consumer Advisor y Panel Provides Us Insight! participants; SCIORG coordinates the gathering of a consumer advisory panel (CAP) on a quarterly basis. Our CAP is made up of a diverse group (injury level, gender, race) of folks with spinal cord injuries . The goal of CAP is to obtain the perspective of people who understand and represent the larger consumer
(2)review of study results to obtain their interpretation and direction for future research;
viewpoint. CAP addresses a variety of research issues, including: (1) review of measurement tools including study surveys used to gather SCI related information from
(3) review of all material that is sent out to research participants to reaffirm that we are using disability sensitive and consumer friendly language.
Participant Corner “Being a CAP participant provides me an opportunity to help others by using my insight, passion and experience to influence SCI research.” ~Maria Saxon, CAP participant
Maintaining longevity: Finding purpose in life ( part A) This is the first in a series of newsletters that ask the basic question: “How do I maintain my longevity?”. In this issue, we focus on purpose in life. In upcoming newsletters, we will focus on health, behaviors, psychological factors, and social factors. As most people are aware, SCI can lead to early mortality. However, SCI does not necessarily lead to early mortality for any given person. We have been privileged to know many people who have lived 50 or more years after their injury. One participant and good friend was injured in his mid-30s with a complete cervical injury and now is over 80. One important factor related to longevity is finding purpose in life.
What does that mean? There is no single answer, as every person may find their own meaning. It may be work, family, spirituality, or something else. What gives an individual purpose in life may not be as important as gaining or maintaining a sense of purpose. SCI presents many challenges. It may take away some of those things which have given us purpose. It may result in losing a job, straining family relationships, or making it difficult or impossible to perform cherished activities. We often talk about adjustment after SCI. What does this mean? Our research suggests that adjustment is, in part, a process of finding and maintaining meaning in life.
Ongoing Researc h Updates! We 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 to 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 1400 completed surveys from participants. In addition, we are in the data collection phase of the study, “Participation, Subjective Wellbeing, 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 475 completed surveys from participants.
“As both an investigator and someone who has lived 37 years with a SCI, I firmly believe that finding something to wrap your arms around is very important to both quality of life and longevity after SCI.” ~Dr. James Krause
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DR. JAMES S. KRAUSE
MUSC-College of Health Professions Department of Health Science and Research 77 President Street MSC 700 Charleston SC 29425-7000
Phone: 1-866-313-9963 Fax: 843-792-5649 E-mail: krause@musc.edu
DR. JAMES KRAUSE AND THE REST OF THE SPINAL CORD INJURY OUTCOMES RESEARCH TEAM WISH YOU AND YOUR FAMILY A HEALTHY, PROSPEROUS 2009!
How will increasing my education affect my chances of working? (Continued from page 2) However, for those with the most severe cervical injuries (C1C4), it took a Masters degree before the employment rate exceeded 50%. Once participants had a Masters degree, there was very little difference in employment rates. These results are intended to show the importance of education to employment. However, it is important to note that some people return to work even without a great deal of education. Some of these people had severe injuries. Therefore, while education dramatically enhances your chances to become employed, there are exceptions to the rule. Talking with a vocational counselor may be the best first step in developing a plan to work after SCI.
We b s i t e s To C h e c k O u t ! 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
Disclaimer: We list these websites for your information only and do not endorse the information posted on these websites.