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                                          Spring 2009                        June 2009

                                          WE MOVE RESEARCH REPORT

Understanding Spasticity
Spasticity—an involuntary,                with multiple sclerosis have at    fer current technologies in
velocity-dependent, increased             least some degree of spastic-      therapeutic management,
resistance to stretch—may be              ity, and nearly half of the        such as continuous intrathe-
the result of stroke, anoxia,             247,000 Americans who are          cal baclofen infusion (ITB),
multiple sclerosis, or trau-              living with a spinal cord injury   chemodenervation with
matic injury to the brain or              have spasticity.                   botulinum toxin, neurolysis
spinal cord. As survival rates                                               with alcohol or phenol, serial
and treatments for these con-                                                casting or other progressive,
ditions have improved, the                                                   innovative combination thera-
                                          with move-
number of people living with                                                 pies.
                                          ment disor-
spasticity has continued to
                                          ders may
rise. An estimated 700,000
                                          have ac-
people in the United States
                                          cess to therapy and primary
had a stroke in 2005, almost
                                          care through local clinics,
20% of whom developed
                                          hospitals or schools, they
spasticity. According to the
                                          may not have the information
Centers for Disease Control
                                          or access to the most current
and Prevention, 70% to 80%
                                          technologies in medical man-
of the estimated 230,000 chil-
                                          agement of movement disor-
dren with cerebral palsy have
                                          ders. Many primary care and
the spastic form of the disor-
                                          rehabilitation providers in lo-
der. A recent study has
                                          cal communities have limited
shown that more than 80% of
                                          information, access and re-
the approximately 400,000
                                          sources to refer clients or of-
people in the United States

Inside this issue:
Patient-Physician Relationship                  2

Satisfaction with Health & Management           3

Patient Understanding of Spasticity             3

The Impact of Spasticity                        4                            204 W. 84th Street
                                                                               New York, NY
The Most Troubling Symptoms of Spasticity       5
About This Research                             5

Therapies Utilized to Manage Spasticity         6

The Side Effects of Spasticity Therapy          7
                  Page 2                                                                                      UNDERSTANDING SPASTICITY

                                                            Patient-Physician Relationship
                                                            While most patients are                      were named more fre-                         specialists, such as
                                                            under the care of multiple                   quently. There were                          movement disorders phy-
                                                            physicians, the majority of                  some respondents (14%                        sicians, neurologists or
                                                            respondents associated                       of total responses) who                      physiatrists, reported a
                                                            the care of their spasticity                 indicated that the physi-                    higher degree of satisfac-
                                                            with only one physician                      cian providing care for                      tion with their physician
                                                            (60%). Of the patients                       their spasticity was a pri-                  communication than pa-
                                                            associating care of their                    mary care doctor—family                      tients under the care of
                                                            spasticity with one type of                  practice or internal medi-                   primary care physicians.
                                                            physician, neurologists                      cine. In 28% of surveyed                    All respondents, regard-
                                                                                                         patients, two physicians                    less of the underlying
                      Other (please                                                                      were associated with their                  cause of their spasticity,
                         specify)                                                                        spasticity care. Three or
                           13%                                                                                                                       indicated that they com-
Internist (Internal
                                                                                                         more physicians were                        municate well with their
    Medicine)                                                                                            named by12% of the re-                      physicians and that their
                                                                                                         spondents.                                  physicians take the time
                                                                                                          In general, people living                  to explain spasticity and
            Family Practitioner                                                                                                                      its management. Patients
                                                                                                         with spasticity are satis-
                                                                                                         fied with their relationship                with cerebral palsy-
                                                                                                         with their physician.                       associated spasticity
                                      (Physical Medicine                                                 Eighty percent of respon-                   were in strongest agree-
                                      and Rehabilitation)                                                dents indicated some                        ment with the state-
                                             24%                                                         degree of satisfaction with                 ment. Those patients
                                                                                                         the nature of the commu-                    whose spasticity was
                                                                                                         nication with their physi-                  managed by a movement
                                                                              Disorder Specialist                                                    disorder specialist ex-
                                                                                      4%                 cian. Patients under the
                                                                                                         care of movement disor-                     pressed the highest
                                                                                                         der specialists reported a                  agreement with the state-
What type of physician helps you manage the symptoms                                                     higher degree of satisfac-                  ment. Those being man-
of spasticity? Responses reflect answers of those people                                                 tion with physician-patient                 aged by a family practitio-
associating only one physician with spasticity care.                                                     communication. All pa-                      ner or an internist ex-
                                                                                                         tients under the care of                    pressed less agreement.

                                                            Movement Disorder           …
                                                                                                                                               I am doing everything
                                                                      Physiatrist                                                              that has been
                                                                                                                                               recommended to me
                                                                     Neurologist                                                               with regard to managing
                                                                                                                                               the symptoms of
                                                                    All spasticity                                                             spasticity.
                                                              Internal Medicine                                                                I communicate well with
                                                                                                                                               my physician. All my
                                                             Family Practitioner                                                               questions are answered
                                                                                                                                               and time is taken by my
                                                                             Other                                                             doctor to explain

                                                                                             Degree of Agreement
                                                                              Strongly disagree...............................Strongly agree

                                                      Please indicate how strongly you agree with the statements, I communicate well with
                                                      my physician. All my questions are answered and time is taken by my doctor to
                                                      explain spasticity and its management and I am doing everything that has been
                                                      recommended to me with regard to managing the symptoms of spasticity.
SPRING 2009                                                                                                                                      Page 3

Satisfaction with Health and Spasticity Management
Less than half of spastic-     disorders special-                        Strongly                               Strongly agree
                                                                         disagree                                     5%
ity patients (45%) indi-       ists were most                               10%
cated that they were sat-      satisfied with man-
isfied with their overall      agement of their
health and the degree of       spasticity. Those         21%
management of their            patients under the
spasticity. In fact, only      care of family
21% indicated a strong         practitioners and
degree of satisfaction.        “other health care
These data were parsed         providers” were
into subsets and then          the least satisfied
analyzed. The analysis on      with their spasticity                                                                                                     agree
one subset of patients,        care and overall                                                                                                           24%
who associated the care        health.                     Slightly                            Neither agree
                                                          disagree                              or disagree
of their spasticity with one                                 13%                                     11%
physician only, clearly
demonstrated that pa-                                  Please indicate how strongly you agree with the statement: I believe that
tients under the care of                               my symptoms from spasticity are well managed and I am satisfied with
neurologists or movement                               my overall health right now.

Understanding of Spasticity
Spasticity patients dem-       Again, those pa-
onstrated a high degree        tients under the
of confidence when asked       care of a move-
to self-assess their level     ment disorder spe-                                                                                     Strongly disagree
of understanding regard-       cialist feel most               70%
                                                                                                                                      Slightly disagree
ing spasticity and its man-    confident in the                60%
                                                                                   Somewhat agree,
                                                                                        30%                                           Neither agree or disagree
agement. Forty-six per-        degree of knowl-                50%                                                                    Somewhat agree
cent of survey respon-         edge they possess               40%                                                                    Agree
dents indicated agree-         while patients ex-              30%                    Agree, 34%                                      Strongly agree
ment or strong agreement       clusively under the             20%
with the statement that        care of family                  10%                  Strongly agree,
they fully understand          practitioners and                  0%

spasticity and its manage-     other healthcare
                                                        Please indicate how strongly you agree with the statement: I fully under-
ment. Only 15% demon-          professionals dem-       stand spasticity and its management.
strated a lack of confi-       onstrated the least
dence that their spasticity    amount of confi-
knowledge was complete.        dence in their
                                                          Movement Disorder Specialist
About 43% of respondents       knowledge of
seemed ambivalent or           spasticity and its                              Neurologist
unsure of their level of       management.                                      Physiatrist
confidence in their knowl-
                                                                              All spasticity
edge. This group in-
cluded the responses                                                   Family Practitioner
“somewhat agree,”                                                       Internal Medicine
“neither agree nor dis-
agree” and “somewhat
                                                                                                                 Degree of Agreement
                                                                                                Strongly disagree...................................Strongly agree

                                                        Please indicate how strongly you agree with the statement: I fully under-
                                                        stand spasticity and its management. (by type of physician associated with
                                                        spasticity care)
     Page 4                                                            UNDERSTANDING SPASTICITY

                              The Impact of Spasticity
                              Close to 60% of respondents indicated that their spasticity had rendered them inca-
                              pable of employment, while 29% reported that their ability to function at work was
                              hampered by their spasticity. Only 11% reported no interference at work.
                              Most people living with spasticity reported that the symptoms of spasticity interfered
                              with their ability to perform their routine activities of daily living. Only 22% of respon-
                              dents stated that spasticity did not affect these activities, or only had a slight impact.
                              Most respondents (62%) stated that spasticity limits their ability to participate in ac-
                              tivities outside the home, or requires that they be accompanied by a companion
                              when they are outside the home.

                                      Impact on Employment
                                                 No difficulty
           Usual level of occupation but some interference
   Most activities unlimited with selected activities difficult
               Working at lower than usual occupation level
    Unable to engage in voluntary or gainful employment
    Little or no ability to perform domestic responsibilities

                         Impact on Acitivities of Daily Living
                                                  No difficulty
        Activities unlimited but some there is interference
  Most activities unlimited with selected activities difficult
                      Most activities hampered or laborious
      All activities are impaired and some are impossible
              Dependent on others in most self-care tasks

                              Impact on Outside Activities
                                                No difficulty
           Unlimited activities but bothered by spasticity
 Accomplish activities only when accompanied by others
                       Limited activities outside the home
     Rarely if ever engage in activities outside my home

                                    I never learned to drive
                                                No difficulty
      Unlimited ability to drive but bothered by spasticity
                            Can drive only short distances
           Usually cannot drive because of my spasticity
Unable to drive and cannot ride in a car for long stretches

                                                                  0%    5%   10%   15%   20%    25%     30%    35%    40%
SPRING 2009                                                                                                                                           Page 5

The Most Troubling Symptoms of Spasticity

When asked to name just          patient assessments re-                            Inability to sleep,
                                                                                                             Other (please
                                                                                                              specify), 7%
one symptom—the one              lating symptoms (e.g.,                                       2%                                            Stiffness or muscle
                                                                                                                                            contractions, 23%
with the greatest negative       limited ROM, stiffness,
impact on their quality of       ease of movement, disor-             Limitations in
life (QOL)—people living         ganized gait patterns,              activities of daily
                                                                        living , 22%
with spasticity reported a       etc.) to a decrease in
basically uniform or con-        QOL are valid to the ex-
sistent finding. This was        tent that functional
true regardless of the           changes can also be
underlying disease state         used by physicians as a                                                                                         Stiffness/limited
                                                                                    Pain, 9%
or condition associated          measure of quality of life                                                                                      range of motion
                                                                                                                                                     in affected
with their spasticity.           issues.                                      Abnormal posture,
                                                                                                                                                   muscles, 36%

Over one-third of survey         In addition, twenty-three
respondents named                percent of patients sur-      There are a number of symptoms associated with spasticity. Of the list
“stiffness or limited range      veyed identified “stiffness   below, please indicate which aspect of this disorder has the most
                                                               significant impact on the quality of your life. Please choose ONE.
of motion in affected mus-       or muscle contractions”
cles” as the most dis-           as the symptom with the
abling symptom. The              greatest impact on their
literature supports the          quality of life.
findings that functional
declines can compromise
the patient’s quality of life.
Therefore, subjective

About This Research
The data presented in this  about: the types of physi-
report were collected via   cians that care for people
an online survey posted     living with spasticity; the
on from      nature of patient-                                             Traumatic Brain      Spinal Cord     Cerebral Palsy, 5%
                                                                                              Injury, 4%         Injury, 4%
April 3, 2009 through May   physician relationships;                                                                                    Multiple Sclerosis,
                                                                            Hereditary Spastic                                                   3%
31, 2009. This survey       and the impact of spastic-                       Paraplegia, 11%
was completed by 1,154      ity on activities of daily
people. Of these respon-    living (ADLs), employ-
dents, exactly 589 had a    ment and overall percep-
confirmed diagnosis of      tion of health. The types
spasticity. The remaining   of medications utilized
respondents declared        and the patient perspec-
mixed disease states.       tive of their effectiveness
                                                                                                                              Stroke, 75%
                            and drawbacks were also
Most respondents in this overviewed. These data
sample were people living were gathered for the
with post-stroke spasticity purpose of knowledge
(441).                      gap identification for fu-
                            ture WE MOVE patient               What disorder is related to your spasticity?
The goal of this report is
to describe the experi-     education initiatives.
ence of people living with
spasticity. The partici-
pants were limited to peo-
ple living in the United
States. WE MOVE
wanted to hear from the
spasticity community
            Page 6                                                                UNDERSTANDING SPASTICITY

                                               Therapies Utilized to Manage Spasticity
What medications, medical devices or injectable therapies do you               Using the “other (please      ally not satisfied with the
utilize to manage the symptoms of spasticity?                                  specify)” category, 38% of    therapies they utilize.
                                                                               respondents indicated         The majority of affirmative
                                                                               that they do not utilize      responses were in the
                                                      Injectable therapies     any therapy for manage-       category of “somewhat
                                                      such as botulinum
                                                                               ment of their spasticity. A   satisfied.”
                                                      toxin or phenol
                                                                               roughly equal number of
                          17%                         Oral medications         spasticity patients utilize
                                                                               oral medications (37%).
                                37%                                            Injectable therapies, such
               8%                                     Intrathecal baclofen     as botulinum toxin
                                                                               (BoNT), are utilized by
                                                                               17% of respomdents;
                                                      Other (please specify)   intrathecal baclofen (ITB)
                                                                               therapy is utilized by only
                                                                               8% of respondents.

                                                                               Patients utilizing ITB or
                                                                               injectable therapies are
Please indicate your degree of agreement with the following statement:
“I believe that the injectable therapies/oral medications/ITB I utilize
                                                                               slightly more satisfied
manage my symptoms of spasticity effectively.”(1 totally dis-                  with their health and
agree/7 totally agree)                                                         spasticity management
                                                                               than those utilizing oral
                                                                               medications or no thera-
                                                                               pies at all.

                                                                               Respondents were asked
                                                                               to identify their agreement
               4.71               4.13                                         with the following state-
                                                        3.83                   ment: I believe that the
                                                                               {injectable therapies/oral
                                                                               medications/ITB} I utilize
                                                                               manage my symptoms of
         Intrathecal    Injectable therapies    Oral medications
          baclofen      (botulinum toxin or
                                                                               spasticity effectively. The
                               phenol)                                         results indicate that spas-
                                                                               ticity patients are gener-
SPRING 2009                                                                                                    Page 7

The Side Effects of Spasticity Therapy
Most therapeutic ap-
proaches to the treatment
of spasticity, including                   Other (please specify)
oral, intrathecal and in-                               Dry mouth
jectable therapies, have
side effects. These side
effects vary greatly from                                 Diarrhea
drug to drug and from                       Memory impairment
patient to patient. The                                 Clumsiness
most common, frequently
mentioned side effects                                 Depression
were drowsiness and                                       Dizziness
fatigue. Others side ef-                                   Nausea
fects included dry mouth,
weakness, depression,           Confusion/inability to think clearly
clumsiness and memory                                      Fatigue
impairment. Close to                                   Drowsiness
30% of respondents re-
ported that they did not                            Hallucinations
experience side effects                                      None
from their spasticity man-
agement.                                                                   0%       10%        20%        30%       40%

                             Please indicate the side effects you experience from the medication, medical devices or therapies
                             you currently utilize to manage the symptoms of spasticity.
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                                         profit organization that
                                         utilizes creativity, innova-
 204 W. 84th Street                      tion, and collaborative ap-
 3rd Floor
 New York, NY 10024
                                         proaches to improve
                                         awareness, diagnosis,                           WE MOVE gratefully
                                         and management of                               acknowledges funding for
                                                                                         this survey from Merz
                                         movement disorders                              Pharmaceuticals.
                                         among people living with
                                         these conditions and the
                                         professionals who care for                      Copyright WE MOVE 2009
we move invites you to explore the         for healthcare
Movement Disorder Virtual University professionals
at —your source for movement
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