Volume 1, Issue 1, Summer 2008
SCIORG Research Participant Newsletter A newsletter of research results and implications for study participants SCI Clinical Research: Topics and Implications for Individuals with Spinal Cord Injuries
All research activities presented here are written in simple language and based on funded research, using valid procedures and analysis. We will attempt to present the findings and conclusions in a way that a person with an SCI will be able to see possible applications or implications for their lives. Additionally, this newsletter will allow research participants to see how the studies they participate in may benefit their own lives. For more in-depth information, please refer to full published articles when referenced. SCIORG Research Participant Newsletters will continue to be published on a regular basis as long as funding allows.
Study Title: Mortality After Spinal Cord Injury: An 11-Year Prospective Study J. Stuart Krause, PhD, Maya Sternberg, PhD, Sarah Lottes, Joseph Maides, B At one time, individuals with SCI generally died shortly after injury. Persons with SCI continue to die sooner than the non-SCI population, despite advances in medicine and services. In the past 50 years, the length of life after SCI has greatly increased. Existing research suggests that death rates, especially those from urinary tract complications, are on the decline. Respiratory complications, heart disease, and septicemia (blood poisoning from an infection) are now prominent causes of death after SCI. Since advances in medical management have increased life expectancy after SCI, research suggests a healthy lifestyle is essential to reduce preventable deaths. Two types of self-destructive behavior may be related to preventable deaths: direct self-destructive behavior and indirect self-destructive behavior. While suicide is the obvious type of direct self-destructive behavior, indirect self-destructive behavior including excessive risk taking, excessive alcohol or drug use, and smoking may also lead to death. Purpose: The purpose of this study was to identify the risk of mortality (the number of deaths in a given time) over an 11-year period (1985-1996) relating to psychosocial, vocational and medical adjustment after SCI. The participants met three criteria: (1) a traumatic spinal cord
injury, (2) at least 2 years post-injury, and (3) at least 18 years old at the time of the 1985 data collection. A total of 345 participants with SCI completed study materials in 1985, 330 of whom could be reliably classified in 1996 as either survivor or deceased. Of these 330 participants, 84% were alive in 1996 and the other 16% were deceased. The 1996 participants completed The Life Situation Questionnaire (LSQ) to measure indicators related to life adjustment after SCI, including Employment Status, Medical Instability, Adjustment, General Satisfaction, Emotional Distress, Dependency, and Poor Health. Summary and Evaluation of the Study Findings: The results of the current study were generally consistent with those from previous studies. A lower overall quality of life was again found to be predictive of an earlier death. As with previous studies, limited activities and unemployment were highly significant predictors of death. Emotional distress and dependency were similarly also factors that are highly predictive of death. Despite these consistencies, several small but important differences were noted between the studies. First, unlike previous studies, several indicators of health were associated with early death in the current study, particularly the extent to which individuals were hospitalized within the 2 years before data collection in 1985. During previous studies, the lack of a significant relationship between medical treatments and death was attributed to two possible explanations: (1) individuals were not seeking medical attention for their problems, or (2) death was more highly related to acute conditions that did not require repeated hospitalizations than it was to a period of chronic normal functioning decline. The most likely reason for the differences between studies relates to changes in medical practices over the past decade. Re-hospitalization rates have decreased since the earlier prospective studies indicating that only more severe conditions are being treated with inpatient hospitalizations, many of which could lead to death. A second change relates to the relative importance of the indicators. Clearly, an overall satisfying lifestyle in which the individual feels able to control her or his environment has taken on a greater importance in the current study. Activity, both social and vocational, leads to a longer life, as shown in each of the prospective studies. Now, however, the individual’s own evaluation of their life appears to be highly predictive of survival. In particular, an individual's perception of the amount of control he or she has over resources (such as availability of transportation, attendant care) and other life opportunities appears to be the best indicator of earlier death. The most reasonable explanation for these findings is that individuals who are the most competent in finding resources are the ones most likely to continue to survive their injuries. What does this study mean to you? The results of this study provide a strong testament to the importance of an overall active, healthy, satisfying lifestyle after SCI. Even after taking into account the biographic and injury-related factors, such as age and completeness of injury, participants who reported superior adjustment patterns were more likely to survive their injuries over the 11-year period than were participants who were more poorly adjusted. Furthermore, participants who were unemployed had more than twice the risk for death than did participants who were employed. Previous research has suggested that employment is facilitated by multiple factors, particularly participation in educational activities. Moving from unemployment to employment has also been found to be followed by multiple changes in life adjustment. Taken together, this suggests that becoming employed leads to a number of positive life changes that may ultimately lead to living longer. Given the strength of the relation between life adjustment and death, it is important that rehabilitation professionals take a proactive preventative approach to promoting life adjustment, as opposed to focusing on treating secondary health conditions after they develop. This requires a comprehensive approach to rehabilitation, something that is becoming more threatened every day in the managed care era. A particularly aggressive approach is needed when high risk, poor or inadequate adaptation or adjustment patterns are noted among people with SCI. Additionally, intervention attempts are essential when dealing with issues such as despondency, dependency, and substance abuse.
Volume 1, Issue 1
SCIORG Research Participant Newsletter
We have a new website for the Spinal Cord Injury Research Outcomes Group (SCIORG) Check it out! www.musc.edu/chp/sciorg Our SCIORG website is designed to: • •
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Provide SCI researchers and consumers information about current spinal cord injury outcomes research, recent study results, and upcoming study participation opportunities. Provide people living with spinal cord injury and their families’ useful resources such as community agencies, SCI health information and medical supplies companies. Check out our Family/SCI Support Links and South Carolina/Links pages. Provide information and resources for people interested in learning more about advocacy. Checkout the Legislators/Policy Corner page. Now Recruiting… Individuals with Spinal Cord Injury for a study to explore the effect that living with a spinal cord injury has on your health a) are more than 18 years old, b) have chronic paralysis due to spinal cord injury, c) have been injured at least 2 years, d)are wheelchair dependent for mobility and are interested in more information about our research study, Please contact Richard Aust (843) 792-2605
This study is being conducted at the General Clinical Research Center at MUSC and will involve approximately 30 volunteers.
SCIORG Team receives national recognition! April 2008-Dr. Krause of the SCIORG team was very much honored to accept the 1st Annual Best Paper Award of 2008 from the National Association of Rehabilitation Research and Training Centers, for the manuscript: Does pain interference mediate the relationship of independence in ambulation with depressive symptoms after spinal cord injury? Krause, J.S, Brotherton, S., Morrisette, D., Newman, S., & Karakostas T. (2007). SCIORG College of Health Professions 77 President St. MSC 700 Charleston, SC 29425-7000
SCIORG is developing a list of potential research participants!
Consumer CornerDo You Know? James S. Krause, PhD,
Are you living with a spinal cord injury? Are you looking for a way to make a difference by getting involved in SCI research? When you contact us, we will ask you some basic background information and add your name to our database for potential participation in future SCI research studies. For more information on becoming a research participant, please email us at aust@musc.edu or call us toll free 1-866-313-9963
New Trident Spinal Cord Injury Peer Support Group
Education: BA, Psychology, University of Minnesota (1980) PhD, Psychology, University of Minnesota (1990) Jim Krause lives in James Island, SC and has worked in the field of SCI for the past 20 years. He currently is a professor at the Medical University of South Carolina where he is the Scientific Director of the state fund dedicated to SCI research and a state funded center for interdisciplinary SCI research. His interest in SCI research began after receiving treatment for his own SCI as result of a diving accident in 1971. He obtained his bachelors as well as his doctoral degrees in psychology from the University of Minnesota after his application for enrollment to the most wheelchair accessible college in the state was turned down due to the extent of his SCI limitations. He spent the next 13 years at a facility in Georgia that treats more new SCIs than any other hospital in the country. He has a lifelong commitment to research of the issues of importance to people with SCI such as employment, secondary health conditions, quality of life, and the dynamic relationships related to change and aging.
Do you live in Charleston, Dorchester, or Berkeley County?
This group is open to any person with a spinal cord injury or other mobility difficulties. The meetings provide a forum for the members to discuss problems and receive immediate feedback. Some members use the meetings to brainstorm with peers possible solutions to ongoing problems. In addition, the group provides members with social opportunities to develop a social network. Meetings are held every other month on the second Tuesday evening, (6:00-7:30 PM).
Remaining 2008 Meeting Dates • • • •
July 8, 2008 September 9, 2008 November 11, 2008 December 9, 2008 (Christmas Holidays party)
Note that this schedule is subject to change, including additional planned social outings. All meetings are held at the HealthSouth Rehabilitation Hospital - 9181 Medcom Street, North Charleston, SC 29406 (Located off Hwy. 78, across from Charleston Southern University).
For more information call Ruth Jones, (843) 863-1165 or Richard Aust, (843) 792-2605, email: aust@musc.edu