Longevity after Injury Project NEWS & UPDATES www.longevityafterinjury.com
SPRING 2013
Research Highlight: Ambulation and Complications Related to Devices after SCI After a spinal cord injury (SCI), walking is a goal that many hope to achieve. Walking again can be a huge milestone, but it does come with some costs. It is important to understand how pain, fatigue, and overall health can get worse from long-term walking in those with an SCI. The information can be used to help prevent negative health outcomes and to learn about the quality of life of those who walk.
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Our team recently finished a study exploring long-term health outcomes in those who walk after an incomplete SCI. Participants were asked about their walking skills and use of assistive devices when walking. Assistive devices include walkers, canes, wheelchairs, crutches, leg braces, or help from other people. Participants were also asked to rate how strong their pain is, how pain gets in the way of their daily life, total pain symptoms, and fatigue. We then looked to see how pain and fatigue relate to the use of assistive walking devices. Below are some of our significant study results: 66.5% of participants with incomplete SCI who walk used at least one assistive device The use of a cane was related to higher pain outcomes and increased fatigue. Higher scores on pain intensity, pain interference, and fatigue can be linked to: Using a wheelchair 50% of the time or less Using assistive devices that provide less support (such as a standard cane) Contrary to previous research, relying on other people for assistance with walking did not show an increase in pain interference or fatigue.
Inside this issue: Page
Community Advisory Panel
2
Brenda Parent: An Accessibility Advocate
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CHORCUP Study 4 Updates RRTC Study Updates
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Spinal Cord Injury 6 Research Scientific Conference RRTC Grand Rounds
7
Vial of Life
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Percentage Using Assistive Devices for Walking 35 30 25 20 15 10 5 0
Walker
Crutch
Cane
Leg braces Help from 1-50% 51-100% people time using time using wheelchair wheelchair
An important finding from our study is that long-term use of assistive devices while walking makes pain and fatigue worse. As pain and fatigue both impact overall quality of life, this study is a starting point for future research on quality of life and long-term health outcomes in those with SCI. Knowing that walking may increase pain and fatigue is important for deciding what assistive walking devices to use in an effort to reduce the possibility of pain and fatigue.
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LONGEVITY AFTER INJURY PROJECT
Community Advisory Panel - SCI and Employment
MUSC CAP meeting January 24 , 2013
“ There needs to be more education on the business end to lessen misconceptions that those with SCI take more time off of work or are not as productive due to their disability. ”
Our MUSC Community Advisory Panel (CAP) met on January 24, 2013. The goal of the meeting was to update the CAP on the progress of the RRTC/CHORCUP grants, seek advice on our survey questions, discuss employment-related issues within the SCI population, and discuss the stages of returning to work. Within the committee, 5/7 have worked after SCI. The group agreed it is important to change the mentality from if you’re going back to work after SCI to when you’re going back to work. Recreational therapies are in place in acute care; we need the same thing in place for employment. Benefits Specialists used to be in place to help you figure out what benefits you have, and how to keep those benefits when returning to work. Unfortunately, they are being phased out due to funding. Peer Support - Further education or skills training are very important. CAP members stressed that you need to advocate your needs to peers so they know how to help you navigate the process. The role of the peer is becoming more of a support provider than it used to be, so it is important for peers to be educated and understand how to deal with persons newly injured. Self-Employment Questionnaire - A few CAP members, who have been self-
employed, thought the questions were very applicable. We discussed the importance of not being entitled in regards to employment. No one owes you anything - you have to work hard regardless of life circumstances. Something to consider when making a decision to become self-employed is difficulty with attaining insurance. Pros of being self-employed: make own schedule, worry less about transportation issues, and do not have to worry about accessibility issues in regards to work when working from home. Return to Pre-Injury Employer Questionnaire - We discussed the liability fear of pre-injury employers. For example, a person with an SCI was initially told she would be re-hired but the company did not due to perceived liability issues. There needs to be more education on the business end to lessen misconceptions that those with SCI take more time off of work or are not as productive due to their disability. Proposed additional questions: Did your employer make accommodations? Was there any disability etiquette training for your employer/colleagues? Issues After Returning to Work - Not feeling well (UTI, resp. infection, etc.) and worrying about taking time off from work ‐Transportation (Not nearly enough hand control vans to rent in this area and Tel-ARide is not always reliable)
CAP Attends South Carolina Stingrays Game
Barb and Nina with “Cool Ray”
On Tuesday, February 26, 2013, our team sponsored the first annual outing to a South Carolina Stingrays hockey game for the RRTC/ CHORCUP CAP. The team and CAP members enjoyed watching the exciting game, entertainment between period festivities, and lively conversations. One member of our group had the misfortune of being hit by a puck. Fortunately, the puck
did not do any major damage. After an ice pack, group encouragement, and some excellent TLC from the coliseum staff (including getting the puck), our friend was as good as new. The Stingrays lost 2-1 in overtime against the Gwinnett Gladiators. We would like to thank the North Charleston Coliseum for their generosity in providing tickets to our group this year.
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SPRING 2013
A Conversation With Brenda Parent: An Accessibility Advocate The first time I met Brenda, about 18 years ago, it was hard to miss her passion for trying to make the Charleston area a more accessible place to live, work, and play. Over the years, she has been on countless local/ regional committees and task forces (including our CAP) to advise community leaders and businesses on issues related to accessibility and SCI. Brenda admits she has come a long way from trying to adjust to life after an SCI to being an advocate for every person who needs or will need accessibility in their daily living. As Brenda put it, “It gives me great pleasure to watch other people who are newly injured get out into the community to enjoy a baseball game or a concert and not have to worry about basic accessibility”. On December 13, 1983, at age 22, Brenda broke her neck in a car accident on an icy New Hampshire road while driving to work as a bank auditor . She was told that she would never be independent again. Brenda expressed that, “I spent about 5 years in and out of therapy until I realized that if I did not build my shoulders up anymore, there
would be no clothes that would fit me”. She moved to South Carolina in 1990. Brenda is now one of the most independent people I know, whether she is pushing her manual chair or driving her van, she is always on the go.
For more information about accessible gardening, check out Brenda’s Facebook page: Access to the Garden
Brenda met Kevin, her husband and best friend, in 1997 and expressed that the focus of her life centers around family, friends and gardening. As she talks, you can feel how proud she is of her son, Alex, who is a LTJG (soon to be Lieutenant, USS Abraham Lincoln, Nuclear Propulsion Division Officer, Norfolk, VA). Given that her son started out at liberal arts college and ended up becoming a nuclear engineer, Brenda joked that “he may be the only nuclear engineer in
the Navy who can recite Shakespeare”. After 20 years working as a consultant on almost every issue involving accessibility, Brenda has decided to focus her efforts on the passion of gardening. As a recently certified Master Gardener, accessibility to outdoor spaces and gardens in general (public and private) has now become yet another focus for her. She started her blog, Access to the Garden, to share and communicate with others who are interested in her accessible gardening. Brenda admits she is a home body at heart and has created a backyard oasis, complete with gardens and a pool which she uses for therapy. For Brenda, her garden is a place where she and her husband, Kevin, can destress after a busy day. They are a team and help each other maintain their outdoors space. Enjoy the spring weather Brenda. Keep smiling. ~ Richard Aust
“ It gives me great pleasure to watch other people who are newly injured get out into the community to enjoy a baseball game or a concert and not have to worry about basic accessibility” ~ Brenda Parent
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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
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 April 2013, we reached our goal of 500 surveys by collect 503 surveys (101%) and are finished collecting data. We are currently completing data analysis and publications of study results.
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 April 2013, with our collaborators at Craig Hospital in Denver, CO and at Rancho los Amigos in Downey, CA. we collected 547 responses, surpassing our goal of 458. We are currently completing data analysis and publications of study results.
Welcome to Our New Staff
Populations (CHORCUP)
D’Andra Roper
Alex Jackson
D’Andra is currently majoring in Biology at the College of Charleston where she will be obtaining a Bachelor of Arts degree. She worked with us for 2 years as a part-time student employee before recently becoming a full time employee. Her previous experiences include administrative assistance and working in the clinical settings among those with disabilities. She currently focuses on data entry and cleaning, dissemination, and social media outreach management.
Alex recently joined our team as a Multimedia Specialist. Alex holds a Bachelor of Arts degree in Media Studies Communication from the College of Charleston. He has experience in broadcast writing, photography and videography. Alex also publishes a blog: Tuesday Talk With Alex, a disability blog sharing his personal experiences of living with a spinal cord injury. He will assist the team with dissemination activities including YouTube videos, newsletters, and website content.
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RRTC
RRTC Study Updates Study 1 Update: Risk and protective factors for secondary conditions: A 15year 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. We are currently making follow up calls to our fourth mailing cohort.. As of April 2013, we have 1072 out of 1342 respondents (80%).
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 are currently making follow up calls to our fourth mailing cohort.. As of April 2013, we have 828 out of 950 responses (89%).
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 April 2013, Rancho Los Amigos has collected data on 149 participants.
Rehabilitation Research and Training Center on Secondary Conditions in Individuals with SCI (RRTC)
Welcome to Our New Staff
Elizabeth Walker Elizabeth holds a Master’s Degree in Public Administration from Walden University and a Bachelor’s Degree in EnglishJournalism from Columbia College. Her previous experiences include serving underserved populations and managing federally-funded projects. She currently focuses on racial disparities in rehab and poverty after SCI/disability and assists with the writing of papers and grants.
Melinda holds a Bachelor’s Degree in Psychology from Purdue University. She has several years of experience in clinical settings, including working with those who have an SCI. Currently, her work here focuses on data entry and cleaning, dissemination, and managing our social media outreach initiative.
Melinda Jarnecke
Trey Bingham Trey is currently a 4th year medical student at MUSC with plans of practicing in Psychiatry. He previously worked with us as a summer student, researching spasticity and fatigue in SCI patients. Trey is involved in reviewing abstracts, completing literature reviews, conductingmortality searches, and providing support for ongoing writing of manuscripts and presentations.
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SPRING 2013
Recent Publications Krause, J.S., Cao, Y., & Bozard, J.L. (2013). Saunders, L.L., Krause, J.S., DiPiro, N.D., Kraft, Changes in hospitalization, physician visits, S., & Brotherton, S. (in press). Ambulation and self-reported fitness after spinal cord and complications related to devices after injury: A cross sequential analysis of age, spinal cord injury. Journal of Spinal Cord years since injury, and age at injury onset. Medicine. Archives of Physical Medicine and RehabilitaCao, Y., Selsassie, A., & Krause, J.S. (in press). tion, 94(1), 32-37. Risk of death after hospital discharge with Krause, J.S., Saunders, L.L., DiPiro, N.D., & traumatic spinal cord injury: A populationReed, K.S. (2013.) Theoretical risk and based analysis, 1998-2009. Archives of Physiprevention model for secondary health cal Medicine and Rehabilitation. conditions and mortality after SCI: 15 years of research. Topics in Spinal Cord Inju- Selassie, A., Snipe, L., & Focht, K.L. (in press). Baseline prevalence of heart diseases, hyry Rehabilitation, 19(1), 15-24. pertension, diabetes and obesity in perSelassie, A., Varma, A., Saunders, L.L., & Wellsons with acute traumatic spinal cord injudaregay, W. (2013). Determinants of inry: Potential threats in the recovery trajechospital death after acute spinal cord injutory. Topics in Spinal Cord Injury Rehabilitary: A population-based study. Spinal Cord, tion. 51(1), 48-54.. Smith, J., Park, S., Krause, J.S., & Banik, N. (in Cao, Y., Krause, J.S., & DiPrio, N.D. (in press). press). Oxidative stress, DNA damage, Risk factors for mortality after spinal cord and the telomeric complex as therapeutic targets in acute neurodegeneration. Neuinjury in the USA. Spinal Cord. rochemistry International.
Spinal Cord Injury Research Scientific Conference A Spinal Cord Injury Research Scientific Conference was held on March 22, 2013 in the Bioengineering Building on the MUSC campus. The event was sponsored by the South Carolina Spinal Cord Injury Research Fund.
From our research team, Dr. Lee Saunders spoke on "Health Outcomes Among Persons with Spinal Cord Injury in South Carolina."
:
“Dr. Saunders spoke on Health Outcomes Among Dr. Yue Cao spoke on "Risk of Death after Persons with Hospital Discharge with Traumatic Spinal Spinal Cord Cord Injury in South Carolina, 1998-2009." Injury in The keynote speaker was Jeffrey T. Tubbs, MD, a physiatrist completing his South SCI Medicine Fellowship at Virginia ComCarolina.� monwealth University. In July, he will join Roper Rehabilitation Hospital as Medical Director of the Center for Spinal Cord Injury. The conference was a huge success. Thank you to all who attended!
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SPRING 2013
RRTC Grand Rounds November Grand Rounds
Ms. Morrison discussed locomotor training which reOn Friday, November 9th, teaches walking by using 2012, Sarah Morrison, PT, body weight support and a Vice President Clinical Sertreadmill system in combinavices, Shepherd Center, At- tion with manual assistance lanta, GA, presented, Life by specially-trained physical Care Planning Projectherapists and other memtions for People with Spi- bers of the locomotor team. nal Cord Injury: A Meas- The program also incorpoure of Therapeutic Inter- rates overground training vention Effectiveness. and community ambulation to promote safe and effecLife Care Planning is a reha- tive walking both in and out bilitation and long-term of the home. Ms. Morrison needs assessment of the rea- provided an overview of 2 sonable and necessary case- clinical case studies. specific goods and services required for an individual January Grand Rounds with a catastrophic injury and/or chronic health care On Tuesday, January 29, needs to maximize his or her 2013, Mary Jane Mulcahey, health and independence. A PhD, OTR/L, presented on life plan provides an orga“What is Known about nized concise map for curPediatric-onset SCI?” rent and future needs with associated individual costs. Dr. Mulcahey discussed several etiologies of pediatric
SCI, which included motor vehicle crash, violence, medical/surgical causes, and sports/recreation. She described factors associated with morbidity and mortality in children with SCI. The presentation illustrated longterm outcomes of pediatric SCI, including employment, education, and most comSarah Morrison, PT, mon types of pain. From evaluations collected, attendees were very interested in Dr. Mulcahey’s talk on Computer Adaptive Testing (CAT), which is “one of the most powerful health care instruments of the 21st century.” CAT is an adaptive assessment where subsequent questions are triggered by responses from the previous question.
“Ms. Morrison discussed locomotor training which reteaches walking.”
Check out the presentations on our blog: www.sciandtbiresearch.blogspot.com
Vial of Life Imagine you are home alone and an emergency occurs. Emergency personnel arrive, but they are unaware of any medical conditions you have, and you are unable to convey information to them. Where would they turn? How would they quickly be able to acquire your medical information? Luckily, with the Vial of Life Project, your medical information can be easily found if you take a few
minutes now to prepare your home. First, visit www.vialoflife.com, to print the medical information form or to order a free kit that will arrive in the mail. Once you fill out the form, place it in a plastic baggie, and tape the baggie to the front of your refrigerator door. Tape pictures like the one to the right over the plastic bag and to your home’s front door. Placing the picture on your front door serves to alert
emergency personnel to go to your refrigerator door upon their arrival to find your medical information. Just make sure to regularly update your medical information, and you’re set!
“Placing the picture on your front door serves to alert emergency personnel to go to your refrigerator door upon their arrival .”
LONGEVITY AFTER INJURY PROJECT
SPRING 2013
The Longevity after Injury Project College of Health Professions 77 President St. MSC 700 Charleston, SC 29425-7000
EMAIL: sciresearchteam@musc.edu PHONE: (843) 792-2605 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 # H133B090005)
CHORCUP is funded by the National Institute on Disability and Rehabilitation Research (NIDRR #H133A080064).
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 traumatic injuries, including SCI and TBI, 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. All three of our team websites have recently gotten an updated look: Longevity After Injury Project: http://www.longevityafterinjury.com CHORCUP: http://academicdepartments.musc.edu/chp/longevity_after_injury/ funded_projects/chorcup/index.htm RRTC: http://academicdepartments.musc.edu/chp/longevity_after_injury/ funded_projects/rrtc/ BLOG: http://sciandtbiresearch.blogspot.com/ Facebook: http://www.facebook.com/LongevityafterInjuryProject