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Skriven 2004-10-19 14:05:58 av Alan Hess
Ärende: Reeve's impact on SCI field
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Christopher Reeve's Lasting Effect on Spinal Cord Injury Field: An Expert
Interview With John W. McDonald, MD, PhD

Laurie Barclay, MD

Medscape Medical News 2004. + 2004 Medscape

Oct. 14, 2004 - To many who admired Christopher Reeve as Superman in the
movies, his best starring role was as a superhero championing the cause of
spinal cord?injured individuals. After a tragic accident in 1994 left him with
a complete C2 injury, Reeve became a patient advocate dedicated to increasing
public awareness, broadening treatment options, and improving rehabilitation
for those with similar injuries.

During intensive participation in "activity-based restoration," a novel
rehabilitation program based on patterned neural activity designed to maintain
and generate spinal cord cells, Reeve recovered some sensation and movement
years after his injury. Lessons to be learned from Reeve's spinal cord injury
did not stop with his death this week, as even that highlighted the need for
optimal care to prevent common complications that can become life-threatening.

To learn more about Reeve's effect on the present state-of-the-art and future
developments in spinal cord injury, Medscape's Laurie Barclay interviewed John
W. McDonald, MD, PhD, Reeve's personal physician. Dr. McDonald is director of
the new Spinal Cord Research Center at the Kennedy Krieger Institute in
Baltimore, Maryland, and director of the Spinal Cord Injury Program at
Washington University School of Medicine in St. Louis, Missouri.

Medscape: What contributions did Christopher Reeve make to the field of spinal
cord injury management?

Dr. McDonald: Chris served as a poster boy for this type of high-level injury
that virtually no one ever survives. The rehabilitation books just don't
include people with C2-level injuries. Chris has literally been responsible for
having people with these issues added to the manual. I think that's one of the
biggest contributions that he's made.

In addition, Chris' personality and approach really changed many of the
barriers that exist for people with spinal cord injuries and how their injuries
are managed. For example, for a long time we were told that you can't put a
ventilator-dependent patient in a pool for aqua-therapy, and now we know for
sure that you can and we do this quite routinely. If you stand back, it doesn't
make much sense why we don't do certain things - the only explanation is we've
always done things a certain way and created our own barriers for people who
are dependent on ventilators.

Medscape: Are there other examples that would be useful to physicians caring
for patients with spinal cord injury, particularly regarding the unique
features of Mr. Reeve's injury?

Dr. McDonald: One unique feature that is probably underappreciated is that
injuries are often confined to one or two motor levels. That means that people
don't necessarily need to lose all function at that level. Say someone has an
injury in the cervical region that affects their hand. There's no good reason
why they should lose all function in the hand based on that injury.

Many times, complete loss of function is the result of inactivity or the
inability to use those muscles. We've learned that if you strengthen those
muscles using advanced techniques like functional electrical stimulation,
patients can show improved function that we never thought was possible before.
So it's often useful to do biofeedback and functional electrical muscle
strengthening, particularly in muscle groups that are difficult to treat
through traditional rehabilitation approaches, such as the hands, shoulders,
and abdominal muscles, which aren't strong enough to build up the force needed
to generate further strength.

Medscape: What part did Mr. Reeve play in increasing awareness of spinal cord
injury by the public, the medical community, and the research community?

Dr. McDonald: I think Chris played one of the largest roles I've ever seen in
raising awareness. There's still a great deal left to accomplish, even in the
medical and research communities. Let me give you an example. In the research
community, many of the people doing regeneration research have never had
experience with an individual with a spinal cord injury and how that injury
affects their life. Healthcare professionals outside the specialty of
rehabilitation don't often get to experience how an individual lives with a
disability, outside of his acute medical needs. Chris allowed researchers,
members of the medical community, and even lay-level people to experience this.

Medscape: What was the significance of Mr. Reeve regaining some sensation and
movement, and what role did intensive rehabilitation play in this partial
recovery?

Dr. McDonald: The significance of Chris' regaining some sensation and motor
movement was substantial, because it overturned the old adage that most
recovery from spinal cord injury should occur in the first six months to a
year, and that if you don't experience recovery during that period, you simply
won't get it after.

As a result of Chris' case, we can throw that adage out the window. He had the
worst-case scenario: injury at the highest level, C2; no motor or sensory
function below that level of injury; no recovery of function in the first five
years after the injury. All of our clinical experience and all of the
literature said there was absolutely no chance. It's not surprising that no
rehabilitation groups were willing to work with him because it was considered a
guaranteed failure.

But as it turned out, he recovered substantial sensory and motor function and
was able to feel throughout his entire body within three years of beginning the
therapy. He also recovered the ability to move most of his joints as long as he
was out of gravity in water. He had recovery, which meant it was doable, it was
possible. His experience allowed scientists to believe that they can overcome
these problems. It allowed clinicians to believe that there are things we can
do for people who experience these severe, catastrophic neurologic injuries.

Medscape: What type of rehabilitation did he have that you think allowed that
degree of recovery?

Dr. McDonald: My personal belief is that activity-based therapies were largely
responsible. These therapies are designed to build physical integrity. That is,
they help maintain muscle mass and bone density and provide a cardiovascular
workout to avoid a lot of the chronic complications that accompany paralysis.
At the same time, they optimize activity in the nervous system. By the best
knowledge of the mechanisms of regeneration, this in turn optimizes the body's
own ability to regenerate, which we now believe is much greater than the
complete lack of regenerative ability we assumed 10 years ago. We've
demonstrated in animal models that similar types of activity do enhance
regeneration. We've also seen these approaches enhance recovery of function in
a large group of patients. The real proof of principle, a prospective
randomized trial, is currently being designed to test that.

Medscape: What was the cause of Mr. Reeve's death, what problems were
encountered in management of the complications leading to his death, and what
does this teach us about the management of chronic spinal cord injury?

Dr. McDonald: I wasn't involved in the later stages of Chris' medical care, but
the stated cause of death was cardiac failure, which is the end stage of most
initial causes of death. At the time, Chris was having problems with skin
wounds and related infections. It's likely that it was either sepsis or
pulmonary embolus that led to the ultimate rapid cardiac demise.

Medscape: Do you think autonomic dysreflexia played some role?

Dr. McDonald: Yes, I certainly think it played some role, and I think the most
likely possibility was sepsis and a lack of intravascular volume and the lack
of autonomic response to that.

Medscape: Do you think that was in any way preventable?

Dr. McDonald: I think it's preventable in an ideal world, but I think the
lesson of Chris' death shows the world that we don't need to focus just on
finding a cure. Patients have a lot of problems just existing, even with
optimal care. Optimal care is very difficult to deliver in these chronic
situations, particularly in the home. This is a problem that occurs daily in
patients with spinal cord injuries.

I think that in Chris' case, they did a wonderful job with his treatment. I
know the groups that were involved, and if this was preventable, it would have
been prevented. Unfortunately, complications like skin breakdown occur even
with the best of care in patients in these settings. It really requires a
change in our paradigm of care delivery to really change these problems.

Medscape: What advances in the treatment of spinal cord injury have occurred
since Mr. Reeve became injured, and what part did he play in facilitating these
advancements?

Dr. McDonald: The biggest changes in development of new treatments for spinal
cord injury have been in the neurorehabilitative realm, in terms of
activity-based therapy. Chris was a single case who galvanized scientists
around the world to refocus their research towards this goal. Although he's
stimulated research across the spectrum, in many different arenas from the most
basic to the most clinical, if there's one area that stands out more than
others it's this rehabilitative approach.

Medscape: How widespread do you think that approach will become?

Dr. McDonald: I think it will become very widespread as long as scientists
develop pragmatic methods for implementation. If we continue to design
treatments that require a patient to come to a center three times a week,
they'll never become effective therapies. If we develop home-based therapies
that are deliverable without any additional caregivers and without substantial
time constraint limitations, we can challenge that goal.

Medscape: What do you see as the future of stem cell research?

Dr. McDonald: I believe, as Chris vehemently believed, that the role of stem
cell research will be critical in the future, not only to develop treatments to
replace cells, but more as a tool of scientific discovery. For example,
embryonic stem cells are a source of human nervous system cells, giving us the
ability to genetically modify both copies of the gene. This is possible only
with embryonic stem cells. This is a proven way of advancing science. For
example, the availability of transgenic animals is largely the result of
embryonic stem cells, and that revolutionized science. We have the same
revolution occurring in the tissue culture dish with human embryonic stem cells
that are now hopefully becoming available.

Medscape: Is there anything you would like to add?

Dr. McDonald: I'm personally very gratified by the day-to-day interactions that
I've had with patients, as well as the opportunity to meet them halfway in
terms of education and learning as a scientist and a clinician. As we approach
every case as an opportunity for learning, we realize that most knowledge is
coming from outliers. Those cases that either do or don't respond maximally
teach us the most. Clinicians do this every day, and I think if clinicians
educated researchers in this approach, that's filling an important role that
only clinicians can.

Reviewed by Gary D. Vogin, MD

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