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SCI RESEARCH TEAM NEWSLETTER www.sciresearchteam.musc.edu Research Highlight Association of race, education, income, and health care access with pressure ulcers:  Trying to prevent one of the most harmful secondary health conditions for those with SCI  

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What’s the largest organ in the human body? It is actually not just “in” the body; it also wraps around it. It’s the skin, and it can be delicate. So it makes sense that pressure ulcers—lesions that cause the skin to break down—are one of the most common problems affecting those with SCI. The good news is they may be preventable if we know the factors that lead to pressure ulcers. The Longevity after Injury Project completed a study to help better understand these factors. We looked at how race, income, education, and health care access relate to the occurrence of pressure ulcers. We measured health care access by asking participants about health insurance, personal doctors, and cost of doctors’ visits. Below are our study results: 20% of participants had a current pressure ulcer; 39% reported having one at some point in the 12 months before the study; 22% reported they had surgery for a pressure ulcer since being injured. (See Figure 1)  When we accounted for income, education, and healthcare access, the rate of pressure ulcers did not differ between people from different races. However, this may be due to differences in household income related to race.  Household income did influence the chance of having a pressure ulcer, and household income is related to race. This suggests that improving household income may reduce how likely it is that people will be to get pressure ulcers.  No significant relationship was found between health care access and pressure ulcers. We need to learn more about this and look at other types of healthcare factors. 

Inside this issue: Page

The Longevity after Injury Project

2

Consumer Advisory Panel

2

A Conversation 3 with Alex Jackson CHORCUP Study 4 Updates Race, Ethnicity Conference & DRC In-Service

5

RRTC Study Updates

6

RRTC Grand Rounds

7

Team News

7

An important finding from this study is that household income plays a role in how likely it is that people will have pressure ulcers. Although we must be careful about interpreting results from a single study, we hope this finding could lead to future policy changes that increase economic opportunities for people with SCI. If so, this may lead to greater prevention of pressure ulcers and, in turn, higher life quality, particularly among those who currently have low household income. We will continue to study different types of access to healthcare that may relate to the likelihood of pressure ulcers. Reference: Saunders LL, Krause JS, Acuna J. Association of race, socioeconomic status, and health care access with pressure ulcers after spinal cord injury. Arch Phys Med Rehabil 2012.


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The Longevity after Injury Project - Over 20 Years of Research “Our goal is always to help people to live as long as possible, in good health, and with the highest possible quality of life.”

For more than 20 years, we have been conducting research on long-range outcomes for people with spinal cord injury or traumatic brain injury. We have had several different research grants to help us do this over the years, and we have often used a name that reflected a particular grant. We are going

to use the term "Longevity after Injury Project" in the future to describe our team’s work, as the focus of our work goes beyond any particular project or any particular grant. Our goal is always to help people to live as long as possible, in good health, and with the highest possible quality of life.

Consumer Advisory Panel On February 16, 2012, our consumer advocate, Richard Aust, conducted a meeting of the Consumer Advisory Panel (CAP) at MUSC. The CAP is comprised of a group of consumers who give their views on our research and help us tailor research findings to the community. The main Charleston CAP meeting discussions for the meeting focused February 16, 2012 on unintentional injuries after SCI and strategies to help people enter the workforce after SCI.

“The CAP agreed that this blog could be useful if a group of 3-5 people with SCI and varied demographics acted as the facilitator.”

First, the CAP compiled a list of consequences of having an unintentional injury after SCI including missing work, school, and church activities, seclusion in their home, emotional depression, increased stress and financial strain, limited recreation and ability to drive, and loss of independence. The panel discussed the effectiveness of creating a blog focused on secondary conditions after SCI. The CAP agreed that this blog could be

useful if a group of 3-5 people with SCI and varied demographics acted as the facilitator. A medical professional should be available to address questions which are asked when people in the community respond to the blog topics. In addition, videos addressing secondary conditions would be an excellent strategy to create interest and community involvement. In discussing employment after SCI, several common themes surfaced for what is needed for a person to reenter the work force. These included education, post-injury training, use of internet and social networking, knowledge of personal skill sets, and overall persistence. Lastly, the panel expressed that volunteer work needs more attention in the field of employment after SCI research since these opportunities are often the transitional stage of getting people back to work.


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A Conversation With Alex Jackson: An Always Smiling Advocate Although he was injured at the C5/C6 level in a car accident when he was only nine months old, Alex grew up in an environment where anything was possible, thanks to the tremendous support and advocacy of his mother, Sherron, a Charleston, SC pediatrician. Alex Jackson is the type of person who makes an impression on you. He always has a smile on his face and permeates a sense of selfconfidence. I first met Alex when he was 12 years old and he was about to have the last of several spinal fusions procedures. Alex expressed to me that “you should live each day the best you can, and make the most out of each opportunity. Don’t dwell on what you cannot do, focus on your abilities.” He is currently working for SPAWAR, the Space and Naval Warfare Systems Center Atlantic in their public affairs office. He assists with all types of writing and social media. Alex has found his job to be an “excellent transition into the real world” after completing his degree in media studies and communications last year at the College of

Charleston. He expressed that his job is providing an improved skill set to effectively tackle disability advocacy issues. Alex’s active social commitments include serving

Alex (right) and Josh, staff, at a Charleston on our RiverDogs Game

tography, and he does not go anywhere without his camera. He had a special camera holder mounted onto his power chair to have a stable platform to aim his camera. Alex is now also finding videography a challenge, especially learning the Mac based video editing software. Alex, at 25 years of age, plans to start his Masters in Communications degree at the College of Charleston in August 2012. He has always had an interest in journalism and admits that he “aspires to be a TV location reporter.” But based on his education, work experience and social commitments, Alex may end up behind the camera. Personally, I think Alex Jackson is a name which will be around in the disability circles for years to come, and, given his abilities, the sky is the limit. Keep smiling, Alex.

“ You should live each day the best you can and make the most out of each opportunity. Don’t dwell on what you cannot do, focus on your abilities.” ~ Alex Jackson

CAP, the Board of Directors of the DisAbility Resource Center (Independent Living Center), member of Young Professionals, a group designed to groom a new generation of disability advocacy leaders, and hosting a weekly SCI consumer blog, Tuesday Talk With Alex, coordinated by the ~ Richard Aust South Carolina Spinal Cord injury Association. Alex has found the Tuesday with Alex blog to be a fulfilling outlet to share his personal experiences and conTo check out the Tuesday Talk With Alex Blog, nect with others with disvisit: abilities. Alex admits that currently his true passion is pho-

http://tuesdaytalkwithalex.wordpress.com


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CHORCUP

CHORCUP Study Updates Study 1 Update: Health behaviors, access to healthcare, and health outcomes: Comparisons of AfricanAmerican participants with SCI and TBI with general population data from the BRFSS.

Center on Health Outcomes Research and Capacity Building for Underserved Populations (CHORCUP)

“Students at Spelman College were encouraged to apply to our summer undergraduate research program.”

Study 1 compares African-American health behaviors, access to services, and the prevalence of chronic diseases with the general population. We will identify the extent to which disparities observed in the general population are magnified after injury. We will use this new knowledge to promote healthier behaviors and reduce chronic diseases among African‐Americans with SCI and TBI. As of February 2012, we collected 472/500 surveys (94%). In January, we sent letters to 73 people with SCI who participated in a previous study. This was the final mailing for data collection.

Study 2 Update: Race-ethnicity and risk of adverse health outcomes after SCI: A multisite collaborative study. In Study 2, we will identify psychological, environmental, and behavioral predictors of secondary conditions in underserved populations. We will determine the extent to which patterns of risk and protective factors associated with secondary conditions are consistent across racial-ethnic groups. As of February 2012, we collected 547 responses, surpassing our goal of 458. Data collection is currently on-going with our collaborators at Craig Hospital in Denver, CO and at Rancho los Amigos in Downey, CA. Craig Hospital has 65 responses and Rancho has 104 responses. All totaled, we have 714 responses out 834 needed (86%).

Presentation at Spelman

Recent Publications

Dr. Lee Saunders presented to students and faculty at Spelman College in Atlanta, Georgia on February 16, 2012. She presented on the goals of the CHORCUP study. She also presented the results of Bridget Peter's summer project (Bridget is a graduate of our summer undergraduate research program and a 2011 graduate of Spelman). Students were encouraged to apply to our summer undergraduate research program. Approximately 50 faculty and students were in attendance. This presentation was part of one of the goals of the CHORCUP study which is to educate other professionals on developing rehabilitation research programs with underserved populations.

The following manuscripts were recently accepted to be published in upcoming issues of Topics in Spinal Cord Injury Rehabilitation and Archives of Physical Medicine and Rehabilitation. Brown, S., Saunders, L.L., & Krause, J.S. (in press). Racial disparities in depression and life satisfaction after spinal cord injury: A mediational model. Topics in Spinal Cord Injury Rehabilitation. Saunders, L.L., Krause, J.S., & Acuna, J. (in press). Association of race, socioeconomic status, and health care access with pressure ulcers after spinal cord injury. Archives of Physical Medicine and Rehabilitation.


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CHORCUP

Race, Ethnicity, and Disabilities: State of the Science Conference Our research team was invited to present at the Race, Ethnicity and Disabilities: State of the Science Conference hosted by Project Empowerment in Arlington, VA on March 1-2, 2012. Dr. Lee Saunders delivered a presentation entitled “Developing a fundable program of research focused on underserved populations.” This presentation gave an overview of the history of the Longevity after Injury Project with regards to underserved populations and a detailed summary

of our Center on Health Outcomes Research and Capacity Building for Underserved Populations with SCI and TBI. (CHORCUP). Specific grant components were discussed, such as developing collaborations, involvement of consumers, study objectives, enrollment, training, and dissemination. Josh Acuna presented “Vocational outcomes among underserved populations with SCI: A systematic program of research.” The purpose of

this presentation was to describe multiple studies we have conducted related to vocational outcomes after spinal cord injury (SCI), highlight comparisons as a function of race/ethnicity, discuss the practical implications of these findings for underrepresented populations, and discuss needs for future research. The presentation highlighted several of our published manuscripts on employment, earnings, and vocational interests.

Josh Acuna presented at a Race, Ethnicity and Disabilities Conference on March 2, 2012.

RRTC & CHORCUP In-service at the DisAbility Resource Center On February 6, 2012, our consumer advocate, Richard Aust, conducted an inservice meeting for the RRTC and CHORCUP at the DisAbility Resource Center (DRC) in North Charleston, South Carolina. Mr. Aust met with all DRC staff to discuss the ongoing SCI research activities of the RRTC and CHORCUP studies. DRC staff were very receptive to becoming involved to disseminate RRTC and CHORCUP study results as they become available. Given that 19% of the participants in the CHORCUP study

reported receiving no in-patient or out-patient rehabilitation services, DRC executive director, Gwen Gillenwater, expressed that she would be interested in coordinating secondary conditions trainings for SCI consumers in counties surrounding Charleston, SC. Trainings will be in the areas of preventing skin sores and UTI, as well as other areas recommended by Shepherd Center staff. Note that Shepherd Center is currently conducting inservice trainings for rehabilitation staff throughout South Carolina to reinforce the most effective

practices to reduce secondary conditions after SCI. In addition, DRC staff are very involved in working with the Latino population in the Charleston area, as well as American Indian outreach organizations nationwide. The DRC Latino Outreach Coordinator agreed to meet with our staff to establish a working relationship with local and national Latino advocacy groups to disseminate study results to underserved populations with SCI.

“The DRC Latino Outreach Coordinator, agreed to meet with our staff to establish a working relationship with local and national Latino advocacy groups .”


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RRTC

RRTC Study Updates

Rehabilitation Research and Training Center on Secondary Conditions in Individuals with SCI (RRTC)

Study 1 Update: Risk and protective factors for secondary conditions: A 15-year longitudinal study. Study 1 aims to identify risk and protective factors for secondary conditions. The knowledge gained will help to develop prevention strategies targeting the factors related to the greatest number of secondary conditions. The first mailing was sent in April 2011, and the second mailing was sent in September 2011. As of February 2012, we currently have 673 out of 877 respondents.

Study 2 Update: Association of health services with secondary conditions: Use of a populationbased cohort of persons with SCI in South Carolina. The purpose of Study 2 is to evaluate availability of rehabilitative services and their association with secondary conditions using participants from the state of South Carolina. We sent out the first mailing in May 2011 and another mailing was sent in January 2012. We currently have 610 out of 1000 responses.

Study 3 Update: Risk of Metabolic Syndrome: A 17-year longitudinal study. The goal of Study 3 is to identify how metabolic syndrome (which can lead to heart disease and diabetes) changes over time in persons with SCI. We are also examining how metabolic syndrome relates to other secondary conditions and the factors which may predict metabolic syndrome. As of February 2012, Rancho Los Amigos has collected data on 101 participants.

Recent Publications and Presentations Presentations

Publications The following manuscripts were recently published or will be published in upcoming issues of Archives of Physical Medicine and Rehabilitation, Spinal Cord, and Topics in Spinal Cord Injury Rehabilitation.

Saunders, L., Krause, J.S., Focht, K. (2012). A longitudinal study of depression after spinal cord injury. Spinal Cord, 50 (1), 72-77.

Krause, J.S., Saunders, L.L., & Zhai, Y. (e-pub ahead of print). Published: Stability of predictors of mortality Krause, J.S., & Saunders, L.L. (2011). after spinal cord injury. Spinal Health, secondary conditions, and Cord, first published online 10 life expectancy after spinal cord inju- January 2012, doi: 10.1038/ ry. Archives of Physical Medicine and sc.2011.158. Rehabilitation, 92, 1770-1775. In Press: Krause, J.S., Terza, J., Erten, M., Krause, J.S., & Saunders, L.L. (in Focht, K.L., & Dismuke, C.E. (2012). press). Do risk factors for morPrediction of post-injury employtality after spinal cord injury parment and percentage of time allel those from the general Unitworked after spinal cord injury. Ar- ed States population?. Topics in chives of Physical Medicine and Reha- Spinal Cord Injury Rehabilitation. bilitation, 93 (2), 373-375.

The following were presented at the annual conference of the American Congress of Rehabilitation and Medicine in Atlanta, GA in October 2011. Poster: Krause, J.S., & Bozard, J.L. Natural course of life changes after spinal cord injury: A 35-year longitudinal study. Symposium: Krause, J.S., Saunders, L., DeVivo, M., & Staten, D. Disparities in health outcomes after TBI and SCI.


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RRTC

RRTC Grand Rounds As part of the RRTC grant, we are committed to hosting a Grand Rounds seminar every 4 months throughout the 5 years of the grant. The Grand Rounds will focus on topics related to SCI with a target audience of MUSC and other local hospitals and health care clinicians and researchers. October Grand Rounds On Tuesday, October 25, 2011, our quarterly SCI Grand Rounds featured Dr. Anbesaw Selassie. Dr. Selassie is a co-investigator for Study 2 of the RRTC. He spoke on "Current Trends in Venous Thromboembolism among Persons Hospitalized with Acute Traumatic Spinal Cord Injury: Does Early Access to Rehabilitation Matter?."

Dr. Selassie discussed how insurance status determines the standard and quality of care provided for acutely injured TSCI patients, which influences the risk of VTE. He explained that ensuring health care access to all Americans is indirectly linked with the risk of VTE and citizens can contribute to the reduction of such events by being vocal for fair and equitable healthcare delivery and active engagement in the healthcare debate. January Grand Rounds On Tuesday, January 24, 2012, our quarterly SCI Grand Rounds featured Dr. Sara Kraft of MUSC's Division of Physical Therapy. Dr. Kraft’s presentation was on “The Seating Interface for the Individual with SCI: Minimizing Risk and Maximizing Function."

Dr. Kraft discussed intrinsic and extrinsic factors related to pressure ulcers, as well as the most common sites for ulcers. She described the types of patients who are at low, moderate, and high risk for pressure ulcers and presented guidelines to prevent pressure and friction in a wheel chair to reduce the risk of pressure ulcers. Dr. Kraft had sample wheelchair support devices and cushions for the audience to test, and she demonstrated proper cushioning techniques. Upcoming Grand Rounds Our next SCI Grand Rounds will take place on May 1, 2012 and will feature Dr. Michael J. DeVivo from the University of Alabama at Birmingham.

Dr. Sara Kraft

“Dr. Kraft spoke on ‘The Seating Interface for the Individual with SCI: Minimizing Risk and Maximizing Function’."

Team News We began this quarter with a team retreat in January 2012. The purpose of this retreat was to discuss current research studies, training and dissemination updates, and plans for the future. The entire research team met for two days and went over data collection, data findings, training

opportunities, educational opportunities, publications, presentations, and consumer and professional dissemination. Visitors from the South Carolina SCI Association attended the retreat to give valuable insight and information. The team was able to construct many plans and guide-

lines for successful future research, knowledge translation, and dissemination. We would also like to welcome our newest staff member, Allysan Scatterday, who is now working with us on the RRTC study. Welcome, Allysan!

Allysan Scatterday, New RRTC staff


SCI Research Team The Longevity after Injury Project College of Health Professions 77 President St. MSC 700 Charleston, SC 29425-7000

EMAIL: sciresearchteam@musc.edu PHONE: (843) 792-7051 TOLL FREE: 1-866-313-9963 FAX: (843) 792-5649 OFFICE HOURS: 8 a.m. to 5 p.m. Eastern Standard Time, Monday-Friday

Message from Dr. Jim Krause

RRTC is funded by the National Institute on Disability and Rehabilitation Research (NIDRR # 133B090005)

CHORCUP is funded by the National Institute on Disability and Rehabilitation Research (NIDRR #H133A080064) for a fiveyear period (2008-2013).

We would like to take this opportunity to thank those of you who have participated in our research. Our goal is to help improve the health, function, quality of life, and longevity of people with SCI through research and education. We have made great progress together this year and will let you know about future SCI research studies as they become available.

Websites All three of our team websites have recently gotten an updated look: SCIORG: www.sciresearchteam. musc.edu CHORCUP: http://academicdepartments.musc.edu/chp/CHORCUP RRTC: http://academicdepartments. musc.edu/chp/rrtc BLOG: http://sciandtbiresearch.blogspot.com/


SCIORG Spring 2012 Newsletter