Spring 2014 - Shepherd Center

A NEWSLETTER OF SHEPHERD CENTER
PROVIDER OF MEDICAL TREATMENT, RESEARCH AND REHABILITATION
SPRING 2014
Data Collection: What All of Those Numbers Really Mean
By Lesley M. Hudson, MA, Project Director, Shepherd Center SCIMS Program
The Spinal Cord
Injury Model
System program
(SCIMS), a
national network
of 14 hospitals
that treat patients
with traumatic
Lesley M. Hudson, MA
spinal cord injury, requires that its members
collect a significant amount of information on
patients. This process begins the minute the
injury occurs. Patients and their families are
interviewed shortly after they are admitted to
the hospital for treatment, and then the same
people are contacted to respond to survey
questions every five years after their discharge.
While the data might seem a bit dry to some,
the information collected as part of the
federal research program is worth its weight
in gold. This data helps users describe the
past, analyze the present, and perhaps most
importantly, predict with some accuracy
what the future is going to be like in spinal
cord injury research and care delivery.
The current members of SCIMS collect
data in their own hospitals, and twice a year,
send it to the National Spinal Cord Injury
Statistical Center (NSCISC) at the University
of Alabama at Birmingham. There, experts
analyze the data hospital by hospital and
chart the past, present, and future of the
entire system. Twice a year, a report is
issued to all members of the system. The
most recent report was issued in late 2012
and contains 150,000 forms collected in
three major categories by about 30 hospitals
since 1972. It is the largest collection of data
in the world on individuals who sustained
spinal cord injury due to trauma throughout
the past five decades.
What are some of the things it tells us?
The population that sustains traumatic spinal
cord injury is:
• Getting older;
• Living longer;
• Receiving benefit from new innovations
directly derived from research;
• Achieving a greater level of independence;
• Having fewer complications after discharge
from the hospital;
• Returning to community, work and school
at greater rates than ever before.
All of these indicators, and many others,
help physicians, nurses, therapists,
researchers and others on treatment teams
in spinal cord injury programs shape how
they render care so that, in the future,
patients can receive maximum benefit from
this information.
In addition to gathering the data, submitting
it for analysis and using the results of
the reports from the statistical center,
members of the SCIMS national network
are responsible for sharing what they
have learned as widely as possible. This
translates into professional presentations at
conferences and the publication of articles
and book chapters. But it also means
providing valuable information to the
individuals who have sustained injuries and
their families. This information helps them
live more productive, healthier lives.
Data collection, especially after
discharge from the hospital, is a true
partnership between the professional
asking the questions and the individual who
is living life with spinal cord injury.
Continued on page 7
Shepherd Center Launches Online News Source
By Jane Sanders
This winter, Shepherd Center’s Public
Relations Department launched an online
multimedia news website. The site,
news.shepherd.org, offers timely, relevant,
informative and entertaining news, features,
blogs, graphics, videos and photos.
The news source is updated frequently with
new articles, images and videos, so viewers
may want to bookmark the page in their web
browser and/or subscribe to the website’s
RSS feed, which will deliver content to
readers’ email inboxes. The content is also
shared via Shepherd Center’s social media
pages on Facebook, Twitter and LinkedIn.
Visitors can search the website’s media library
for archived content, as well. That content
includes articles published in past issues
of Shepherd Center’s quarterly magazine
and videos featuring Shepherd Center staff
members and former patients.
2
Readying Patients and Families for the Realities of Returning Home
New project aims to ease transition, lower hospital readmission rates and boost self-confidence.
By Amanda Crowe, MA, MPH
For many people
recovering from
spinal cord injury
(SCI), returning
home is a major
milestone. But it is
not always an easy
one. Suddenly
finding themselves
outside of
Julie Gassaway, RN, MS
Shepherd Center’s
structured and supportive environment can
be daunting for many patients and families –
despite the hands-on tutorials and education
they receive during their stay.
“Patients feel good about going home, but
when they get there, they often feel
overwhelmed,” says Mike Jones, Ph.D., vice
president of research and technology at
Shepherd Center.
To add more complication, most people with
SCI have complex medical and care needs that
must be managed post-discharge. Patients and
caregivers also need to be equipped with the
know-how to guard against infections and other
problems, including strategies to manage their
bowel and skin health. Knowing what to look
for and being able to effectively problem-solve
is critical.
Now, thanks to two new grants totaling an
impressive $4 million, Jones and his team will
be able to transform the educational, peersupport and real-time resources offered to
patients and their caregivers, and evaluate how
these changes might help build patients’ selfefficacy – the belief that they can effectively
manage their care on their own. Julie Gassaway,
RN, MS, is heading the three-year project
funded by the Patient-Centered Outcomes
Research Institute (PCORI) and the Woodruff
Foundation.
The project is allowing researchers to:
1. Expand Shepherd Center’s peermentoring program so patients can
readily connect with and learn from
other people with SCI both at Shepherd
Center and after discharge. This includes
appointing a director to run the peermentoring program.
“Patients tell us one of the most
rewarding aspects of their rehabilitation is
the opportunity to connect with people
who are like them and trade valuable
advice on how to manage problems,”
Gassaway says.
The hope is that the peer-to-peer
support initiated at Shepherd will
eventually serve as a gateway to a larger,
ongoing community of support once
patients return home.
Shepherd Center hopes to offer more interactive educational tools to better
equip patients returning home with the help of the PCORI grant project.
Photos by Louie Favorite
2. Revamp the way patients are
educated about SCI and its
complications by shifting from passive,
lecture-style teaching to a “flippedclassroom” approach in which patients
and families review information online
and then come to class ready to discuss
and apply what they’ve learned with
their peers. This means the questions
that are most on patients’ minds will be
addressed first.
“The education programs at Shepherd
Center are very comprehensive, perhaps
too comprehensive for what patients are
able to absorb and navigate while trying
to deal with their injury,” Gassaway says.
“Our goal is to deliver the same content,
but in a way that is easier to digest, and
so it is at patients’ finger tips when they
are ready to receive it.”
3. Develop customizable patient
portals that will include personalized
medication lists, education and guidance
on specific issues (e.g., bladder, skin) and
access to peer discussions.
With the combined $4 million award,
researchers will be able to collect extensive
data to determine whether the above
interventions affect hospital readmissions,
medical complications, and compliance with
doctor visits and medications post-discharge.
Patients included in the study will be evaluated
30, 90 and 180 days post-discharge and again
at one year.
The hope is that by offering interactive
education sessions and providing one source for
information, individualized online tools and
access to peers who have faced similar
experiences, patients will be better equipped to
make decisions to stay healthy and prevent
problems once they are on their own.
3
Pushing Rehabilitation Care Forward through Clinical Trials
Researchers Answer Your Questions
By Amanda Crowe, MA, MPH
In laboratories and medical centers across
the globe, scientists are uncovering and
testing new ways to treat a variety of illnesses
and injuries – a rigorous process that often
starts in animal models. If and when these
treatments move beyond basic or what
might be called “bench science,” they must
be proven both safe and effective in humans
before they can ever become the standard
of care.
At Shepherd Center, clinical trials have
helped researchers uncover new approaches
to help maximize rehabilitation. Two
Shepherd Center researchers, Issi Clesson,
RN, director of clinical trials, and Deborah
Backus, PT, PhD, director of multiple
sclerosis research, weigh in on the basics.
Why should someone consider
participating in a clinical trial?
It depends on your situation, but there can
be many upsides. Being part of a clinical trial
allows you to take a more active role in your
care. It may also give you access to
treatments – new medications or devices
to improve function and mobility – that
wouldn’t otherwise be available. You are
also helping researchers answer critical
questions that will help others like you in
the future.
Are there risks?
Simply stated, without carefully designed
studies (called clinical trials), advances in
rehabilitation care wouldn’t happen.
Being in a clinical trial doesn’t guarantee that
you will improve or receive the
investigational therapy. You may, instead, be
in the control group, which means you will
receive the current standard of care or a
placebo (an inactive medication). There can
be unexpected side effects, but the research
team monitors these closely.
This type of research has paved the way for
new drugs, biologics, devices and other
therapies to help:
How do I know if I can take part?
Why do we need clinical trials?
• prevent secondary damage that quickly
follows spinal cord injury;
• promote neurological recovery;
• manage symptoms and/or improve function
(spasticity, sexual function, walking speeds
and bladder management);
• alter the way the immune system works in
multiple sclerosis (MS);
• generally make life better for people with
disabilities.
Clinical trials also help researchers and
clinicians determine the best way to diagnose
a problem, administer rehabilitation care
(when, how often and how much) and
identify which individuals will have the best
outcomes.
Can I change my mind once I enroll?
Yes. You can always choose to leave a
clinical trial. But you should share your
reasons with the research team and you may
have to return for a follow up visit.
How is Shepherd Center involved in
clinical trials?
Shepherd Center is committed to improving
the lives of patients and families. “Clinical
trials are one avenue to advance this goal,”
Clesson says. A trial at Shepherd led to FDA
approval of a diaphragm pacing system
device that allows ventilator-dependent
patients with spinal cord injury to wean off
the ventilator full or part-time. “The study
not only freed some patients from the
ventilator, it also was an improvement on the
previous device and invasive surgical
techniques,” Clesson adds.
At any given time, about 550 people are
participating in research at Shepherd.
For information about research under way at
Shepherd, visit shepherd.org/research.
All clinical trials have specific criteria about
who can and cannot participate (called
inclusion and exclusion criteria). At Shepherd,
an early trial looking at an investigational stem
cell therapy was limited to patients with a
diagnosis of complete spinal cord injury. The
reason? So that researchers are more
confident that a response is due to the
therapy and less likely because of natural
healing.
Clinical Trial Resources
For information about clinical
trials, talk with your care
provider. You can also visit:
• Shepherd.org/research
• Clinicaltrials.gov
• Centerwatch.com
4
Moving Forward
Shepherd Step, an intensive walking program, gives hope.
By Matt Winklejohn
Cris Nelson had nearly finished undergoing
a physical exam at his doctor’s office in
October 2012 when a nurse drawing his
blood hit a nerve with a needle. Cris lost
consciousness, fell off the exam table, and
fractured his spine, and broke his ring finger
and nose.
“My arms in the beginning were paralyzed,”
he says. “My fingers were sort of drawn in
toward my palms on both hands, and my
legs were paralyzed.”
Cris spent two months as an inpatient at
Shepherd Center in 2012 and several
months as an outpatient in early 2013.
Following Cris’ injury, few might have
predicted that he would, in the next 15
months, learn so much about how to walk
again – unless, that is, you heard him talk.
Having spent 16 weeks in the Shepherd
Step program at Shepherd Center, the
52-year-old Covington, Ga., husband and
father of two has made fantastic progress in
the intensive walking program for people
with motor-incomplete spinal cord injuries.
His attitude is key.
“I’m about moving on with my life and not
going into depression mode,” he says. “I
want to get back to whatever my new
normal is.”
Cris has come a long way since fracturing his
C-5 and-6 vertebrae and injuring his spinal
cord in October 2012.
“When I first went in, I was not walking, and
when I left, I was able to walk with a walker
and able to stand and balance,” he explains.
Shepherd Step is a program designed for
people with incomplete spinal cord injury,
acquired brain injury and neuromuscular
disorders.
Velma Moore, an outpatient program case
manager at Shepherd Center, offered
criteria for admission to Shepherd Step.
“A patient first needs an order (referral) from
his or her physician,” Moore explains. “They
have to be able to benefit from this
treatment, tolerate an upright position, and
they have to be able to bear some weight
on their legs. They should have some active
muscle movement in their legs and some
sensation below their level of injury.”
Shepherd Center Medical Director Donald P. Leslie,
M.D., talks with Josh Roy as he walks with assistance
on a treadmill. Photo by Gary Meek.
available from physical therapists and
technicians. Patients may participate in
body-weight-supported locomotor training
in addition to other interventions.
“Patients have a variety of injuries, be it MS,
stroke, brain or spinal cord injury,” says
physical therapist Kristen Casperson, who
works in the Shepherd Step program. “We
run two manual treadmills and a roboticsassisted gait training device called a Lokomat
and see six or seven patients on each piece
of equipment daily.”
The program emphasizes locomotor
training, which clinicians believe can
prompt the nervous system to relearn
standing and stepping.
“We also do over-ground walking training in
addition to using the treadmill,” she explains.
“Because the program is tailored to meet
each patient’s end goals, it could mean
anything from walking at home with a walker,
walking with family for exercise, or walking
full-time in the community with or without
assistive devices.”
Cris’ core strength and endurance grew in
Shepherd Step.
“They worked with me a lot on balance and
confidence,” he recalls. “Now, my arms
work really well. I’ve come a long way.”
For more information, visit
shepherd.org/shepherd-step.
Shepherd Step is funded by some insurance
plans, and includes several treatments
Are you interested in taking the first steps to a healthier lifestyle?
Shepherd Center is seeking participants for a
study on weight loss in people with spinal
cord injury. We are looking for people with
tetraplegia or paraplegia to participate in a
multi-center study on the effectiveness of
diet and exercise on weight loss in people
with spinal cord injury. The study will
examine how exercise, nutritional guidance
and professional support can improve your
level of fitness, help you lose weight, reduce
your risks for developing heart disease and
diabetes, and improve your quality of life.
Participation qualifications include:
• Age 18 to 65
• SCI, ASIA A to C
• Injury Level C5-L1
• Greater than one year post-injury
• BMI greater than 22 kg/m²
Contact: Elizabeth Gonzales via email
at [email protected]
or by phone, at 404-350-3116 or
404-989-5298.
5
The Single Most Preventable Cause of Spinal Cord Injury
Shepherd Center works to prevent diving injuries.
By John Christensen
Shepherd Center will launch a campaign this
spring aimed at preventing spinal cord
injuries caused by diving. The focus will be
on young people.
“Diving is what teenage boys do,” says
Herndon Murray, M.D., medical director of
the Spinal Cord Injury Program. “Each
summer, it’s like an epidemic. We expect to
see male teenagers and young men up to
the age of 29 at the hospital, and the most
likely cause of their quadraplegia is diving. I
hate to see kids come in who are paralyzed
for life, especially when the diving injury is
the single most preventable cause of spinal
cord injury.”
The campaign follows three years of research
and interviews with diving injury patients.
Bridget Metzger, director of injury prevention
and education at Shepherd Center, says the
campaign will include posters and signs,
magazine ads, a social media video and
perhaps a radio spot. It will begin as
Memorial Day weekend approaches and
continue throughout the summer.
“The whole point is to raise awareness that
these injuries do happen, and they are so
severe and so preventable,” she says. “We
get very passionate about this particular
cause of injury.”
Shepherd Center has treated 161 patients
with diving-related spinal cord injury in the
past 10 years. Eighty-nine percent of them
were male, and 92 percent of them were
under the age of 40. Diving injuries among
teenagers and young adults spike during the
summer, when they are twice as common as
injuries caused by auto accidents.
Dr. Murray talks with former SCI patient Chase Jones,
of Atlanta, who was injured in August 2012 after diving
into a swimming pool.
“Diving is a high-risk activity,” he says. “We
specifically need to teach kids at a young age
not to do it, like wearing a helmet when you
ride a bike. And we need to teach young
men not to dive into waves. Any single wave
can change your life forever. We have a
moral obligation to keep these kids from
getting hurt. If we can prevent one kid from
being paralyzed for life, it’s worth it.”
One of the most effective forms of
prevention – and one that will be included in
the campaign – is people with firsthand
experience.
During a diving injury presentation to the
International Spinal Cord Injury Society
convention last fall, Dr. Murray included a
photograph of 11 teenagers taken in a
Shepherd Center therapy gym in the
summer of 2012. All were paralyzed, in
wheelchairs and injured by diving.
“Kids remember the speaker in a wheelchair
long after they remember what they said,”
Dr. Murray says. “Kids telling their story is
more powerful than hearing it from a doctor
like me.”
And all of the injuries, Dr. Murray says,
were avoidable.
6
Shepherd Center Takes Integrative Approach to Upper Limb Recovery
Research shapes clinical practice and vice versa, reinforcing Shepherd’s commitment to caring for the
whole person.
By Amanda Crowe, MA, MPH
“We are finding that it’s not all about strength,
but also spasticity, sensation and discoordination,” Backus adds. “Patients often
have trouble turning their muscles on and off
at the right time.”
Upper limb rehabilitation has often played
second fiddle to efforts aimed at reestablishing and strengthening lower-limb
function. It’s seemingly not been as glorified in
the field where images of someone’s first
steps seem unrivaled.
Yet, as many people living with tetraplegia will
attest, regaining use of their hands and arms
may offer even greater independence. This is
not to say walking again isn’t an important goal.
But many patients say doing so will not help
them get dressed, use the bathroom or feed
themselves – daily activities that can leave them
completely dependent on someone else.
Shepherd Center has always been dedicated
to helping patients regain use of their arms
and hands. Now, with the help of Deborah
Backus, PT, Ph.D., director of MS research,
Shepherd is expanding its efforts and taking an
integrative approach to upper limb research
and recovery – and, in turn, giving clinicians
and patients the tools they need to see
improvements sooner.
One promising approach for these patients, in
particular, is a device called AMES. It combines
sensory input using vibrators during repeated
movement to strengthen what normally
happens in the muscles. Research using the
device, done in collaboration with creator,
Paul Cordo, Ph.D., at Oregon Health and
Science University, finds some people have
less pain and spasticity and improved
coordination, which leads to functional
improvements in the use of their limbs. In the
research setting, people with tetraplegia
participated in 12 to 24 sessions with the
device, but dramatic changes in function have
been reported in as few as four sessions.
“What we found in our research was great, but
even better is that we can use it in the clinic in
an everyday setting,” says Casey Kandilakis, PT,
DPT, a Shepherd Center therapist who splits
her time between research and working oneon-one with patients.
She explains there have been real advantages
to involving and engaging clinicians in the
process, too.
“We are helping them integrate the findings
from the literature and our own research
studies into more effective, individualized
treatment sessions, using the ‘cool tools’ we
have,” Kandilakis adds.
Another critical goal, Backus notes, is to amass
enough data to influence health care
reimbursement decisions so people with
tetraplegia can access this kind of rehabilitation.
“Shepherd has really advanced its upper limb
rehabilitation program,” Backus says. “We are
fortunate to have a unique combination of
clinical and research focus.”
By marrying its research program and clinical
data collection, researchers are able to ask
more pointed questions, and clinicians can
better tailor treatments to individual patients.
Backus and her team are also determining the
most important outcome measures and
identifying best practices for using various
technologies and activity-based interventions.
“We are taking what we learn through
research and feeding it directly into the clinic,”
Backus explains. “The upper limb lab actually
came out of these efforts and is allowing us to
deliver a level of care we haven’t been able to
provide before.”
It’s become a symbiotic relationship in which
research and clinical practice inform each
other. The data is also helping researchers
understand how the upper limbs recover
following spinal cord injury (SCI).
Deborah Backus, PT, Ph.D. and Casey Kandilakis, PT, DPT, work with Shepherd Center patient Johnny
Horton, of Santee, S.C., on the AMES device in the upper limb lab. Photos by Louie Favorite.
Shepherd Center Earns Statewide Award for Preventing and Controlling
Hospital-Acquired Infections
By Katie Malone
Shepherd Center has earned a statewide
award for preventing and controlling
infections in the hospital.
The Josh Nahum Award for Achievement in
Infection Prevention and Control was
awarded by the Georgia Hospital Association.
Specifically, Shepherd Center was recognized
for its efforts to reduce hospital-acquired
MRSA Infections, which are common among
people who have weak immune systems and
are in hospitals, nursing homes and other
health care centers.
practice, the 2011 MRSA rate was 0.74 per
1,000 patient days, resulting in 30 patients
with MRSA. In 2013, the rate has declined to
0.31 per 1,000 patient days with only 10
cases of MRSA. Shepherd Center’s
evidence-based practice is leading to safer
care for patients.
The Hospital Engagement Network (HEN) is
a national contract awarded by the Centers
for Medicare & Medicaid Services (CMS). It
engages hospitals across the country to
improve patient safety and quality, and
achieve lower costs. The goal of the HEN is
to reduce unnecessary readmissions by 20
percent and avoidable harm by 40 percent.
Infections can appear around surgical
wounds or devices, like catheters or
implanted feeding tubes. Rates of infection in
hospitals, especially intensive care units, are
rising throughout the world. In U.S. hospitals,
MRSA causes more than 60 percent of staph
infections, according to WebMD.
The award recognizes hospitals with the
greatest improvement and participation in all
“Hospital-Acquired Conditions” improvement
activities through Georgia Hospital
Association’s Hospital Engagement Network
collaboration.
A Shepherd Center nurse works with a patient in ICU.
“Keeping our patients safe and infection free is
our No. 1 priority, which is evident based on
this recognition,” says Gary Ulicny, Ph.D.,
Shepherd Center president and CEO.
Since 2011, Shepherd Center has reduced
the rate of MRSA by more than 50 percent,
resulting in 20 fewer patients each year
acquiring MRSA. While Shepherd Center
staff has always used Standard Precautions to
treat patients, early identification of MRSA
using nasal swab testing upon admission was
key to this project. Prior to initiating the new
A Shepherd Center nurse assists a patient in the Acquired Brain Injury Unit.
Photos by Gary Meek
Data Collection: What All of Those Numbers Really Mean
Continued from page 1
Any success experienced by the professionals
is a direct reflection of the cooperation
between these people. Shepherd Center,
for example, follows 600 individuals annually.
Calls are made, surveys are administered,
and data is recorded, absorbed and used.
That would not happen without the
help of Shepherd Center patients who
volunteer not only their time, but also the
information about their lives that is so vital
to the ongoing work of both clinicians and
researchers.
We thank you and ask you to please
continue to be a part of this important work
by agreeing to share. It makes a difference.
I have worked in spinal cord injury since
1976, and I can say with absolute certainty
that the changes that have occurred in those
38 years have been monumental. With your
help, they will continue in the future!
7
NON-PROFIT ORG.
US POSTAGE
PAID
ATLANTA, GA
PERMIT NO. 1703
AXIS covers news and information about research,
medical treatments, healthy living and events for people
who have experienced spinal cord injury, brain injury or
a related neurological condition.
It is published twice a year.
Questions? Call 404-367-1306
PROJECT DIRECTORS
David Apple, M.D.
Lesley M. Hudson, M.A.
EDITOR
Katie Malone, M.S.
Supported in part by a grant from the National
Institute on Disability and Rehabilitation Research,
U.S. Department of Education, Washington, D.C., for
the Southeastern Regional Spinal Cord Injury Model
System at Shepherd Center in Atlanta, Georgia.
Grant # H133N110005.
If you would like to make a gift to support the work
you have read about, please contact the Shepherd
Center Foundation at 404-350-7305 or visit shepherd.org.
Give $5 by texting: SHEPHERD to 20222
(messaging and data rules may apply)
Shepherd Center Nurses Win Award for Poster at
National Conference
By Katie Malone
A poster on the benefits of personal
assistance dogs won a “People’s Choice
Award” for the four Shepherd Center nurses
who presented it at a national nursing
conference in Charlotte, N.C., this past fall.
Rebecca McWalters, RN, CRRN, poses with the award-winning poster
on assistance dogs. She helped create it for the National Association of
Rehabilitation Nurses Conference in Charlotte, N.C.
Shepherd Center nurses Rebecca McWalters,
RN, CRRN, Linda Putnam, RN, CRRN,
Elyse Costner, RN, CRRN, and Gloria
Reid, RN, CRRN, co-authored the poster
“Shepherd’s ‘Gentle Giant’: Stories of a
Canine Comforter,” which won the award
at the National Association of Rehabilitation
Nurses Conference. The award was based
on votes from conference attendees.
McWalters, who handles Shepherd Center
therapy assistance dog Frosty, presented the
poster at the conference.
“Having Frosty has not only brought joy and
comfort to our patients and family members,
but he has brought joy and comfort to me,”
McWalters says. “Being a part of the miracles
that Frosty gives to the Shepherd community
is priceless. He wipes away fears, calms the
soul and heals the broken-hearted. I cannot
imagine doing what I do without Frosty, or
what Shepherd would do without our fourlegged heroes.”
Shepherd Center is home to three therapy
assistance facility dogs – Frosty, Bentley and
Galion.