The symptoms of multiple sclerosis (MS) that affect mobility have a significant
impact on quality of life, safety, and financial and emotional health among many
people living with MS, according to the results of two 2008 surveys conducted by
Harris Interactive on behalf of Acorda Therapeutics, Inc. and the National MS
Society. The findings, gathered from interviews conducted among representative
samples of 1011 people living with MS and 317 care partners, provide new data
related to the impact of mobility loss and walking difficulty on different
aspects of daily life for people with MS.
Among people with MS surveyed,
almost two-thirds (64%) experience trouble walking, the inability to walk or
loss of balance at least twice each week. Of those people with MS who report
trouble walking, 94% find it at least somewhat disruptive to their overall daily
life, with 63% finding it very disruptive or disruptive. Fully 70% of people
with MS who have difficulty walking* report it to be the most challenging aspect
of their MS. Despite these findings, 39% of the people with MS and 49% of the
care partners who were surveyed report that they rarely or never discuss
mobility issues with a physician.
"Among the many important conclusions
we can draw from these studies is that they indicate we must educate more people
with MS and care partners about the impact of mobility loss and the options now
available to address mobility challenges," said Dr. Nicholas LaRocca, vice
president, health care delivery and policy research, National MS Society.
The studies also found that fatigue is a very common symptom of MS.
Among people with MS, 76% indicate that they experience fatigue at least twice
each week. Of those, 95% report that fatigue is at least somewhat disruptive in
their daily lives, with 60% reporting that fatigue is either "disruptive" or
"very disruptive." Fatigue is also known to have an impact on mobility and
balance for many people living with MS.
"Many people do not realize the
extent to which symptoms such as fatigue can affect people living with MS.
Physical fatigue is a very common symptom of MS that can also affect mobility
and balance. This study clearly demonstrates that it is essential to assess the
impact of multiple symptoms in MS in order to develop effective educational
programs and treatment strategies," observed Dr. LaRocca.
mobility loss is a major concern among people when they are first diagnosed with
MS. The surveys found two of the most commonly cited concerns among people with
MS when they are first diagnosed are restrictions on daily activity (78%) and
the diminished ability to work (76%). Other findings include:
majority of people living with MS think that walking problems
due to MS have
some or a great deal of negative impact on:
- the ability to carry out daily
tasks, such as shopping or going to the bank (70%);
- self esteem (69%); and
- the ability to travel (66%).
- 58%of people with MS who have
difficulty walking say it caused them to miss common, significant life events,
including 22% who missed a wedding and 26% who cancelled vacation plans.
-- Of people with MS who have difficulty walking:
- 74% report
that family members had to take on more household
of difficulty walking;
- 68% find that getting around can be dangerous due
to difficulty walking; and
- 47% find that difficulty walking has increased
the cost of their care.
In addition to exploring the impact of diverse
MS symptoms on the lives of people with MS and on care partners, the surveys
also examined the tools that people with MS are using to deal with difficulty
- 86% of the people with MS who use a mobility device report
they do so to maintain their independence and 54% because of frequent falls;
- 92% of people with MS who use a mobility device report that using a
mobility device is "worth it," though 45% of people with MS report that they are
or would be embarrassed about using a mobility device; and
- 36% of
people with MS who use a mobility device report that they do not use a mobility
device as much as they should.
"These surveys provide important new
insights about how walking disability affects the quality of life of people with
MS, their families and other care partners. Examining walking disability from
different perspectives can help provide a better understanding of its prevalence
and impact. These findings, coupled with previous research on aspects of walking
impairment such as the use of assistive devices, highlight the need to continue
to develop new treatment options," said Andrew Blight, Ph.D., chief scientific
officer of Acorda Therapeutics.
Mobility challenges are also found to
have a profound impact on the careers and financial health of many people with
MS and care partners:
- Among people with MS who are employed and who
experience difficulty walking, 44% have had to take days off from work and 34%
have had to work reduced hours because of difficulty walking.
50% of people with MS who experience difficulty walking report that their living
expenses have increased either a little (32%) or a lot (18%) as a result of
- Among care partners who are employed, 46% report
their work has been negatively impacted, including 32% who have had to take days
off as a result of their care giving responsibilities.
"As someone who
has lived with MS for over two decades now, I see that people with MS are living
fuller and more active lives than ever before, but we clearly have a long way to
go. For me, MS and especially mobility issues have had a direct impact on my
ability to work and the cost of my care. These surveys shed new light on the
challenges that thousands of us with MS are experiencing every day," said Mimi
Mosher, a patient advocate from Mechanicsville, VA, and a person living with MS
who uses both a scooter and a wheelchair.
The full results of the
surveys will be presented at a special media briefing hosted by the National MS
Society on April 8 in New York City. The surveys were sponsored by Acorda
Therapeutics in collaboration with the National MS Society.
survey, mobility or difficulty walking was defined as having trouble walking or
the inability to walk two or more times per week. About the Study
The two surveys were conducted online within the United States by Harris
Interactive of behalf of Acorda Therapeutics and the National MS Society between
January 28 and February 25, 2008 including one survey among 1011 U.S. adults who
had been diagnosed with multiple sclerosis and a separate survey among 317 U.S.
adults who are currently somewhat or very involved with caring for a family
member or friend with multiple sclerosis. No estimates of theoretical sampling
error can be calculated; a full methodology is available upon request.
About Multiple Sclerosis
Multiple sclerosis interrupts
the flow of information between the brain and the body and stops people from
moving. Every hour in the United States, someone is newly diagnosed with MS, an
unpredictable, often disabling disease of the central nervous system. Symptoms
range from reduced or lost mobility to numbness and tingling to blindness and
paralysis. The progress, severity and specific symptoms of MS in any one person
cannot yet be predicted, but advances in research and treatment are moving us
closer to a world free of MS. Most people with MS are diagnosed between the ages
of 20 and 50, with more than twice as many women as men being diagnosed with the
disease. MS affects more than 400,000 people in the U.S. and 2.5 million
worldwide. About the National MS Society
MS stops people
from moving. The National MS Society exists to make sure it doesn't. We help
each person address the challenges of living with MS. In 2006 alone, through our
home office and our 50 state network of chapters, we devoted nearly $126 million
to programs that enhanced more than one million lives to move us closer to a
world free of MS. The Society also invested more than $46 million to support 440
research projects around the world. We are people who want to do something about
MS NOW. National MS Society About Acorda Therapeutics, Inc.
Acorda Therapeutics, Inc. (NASDAQ: ACOR) is a biotechnology company
developing therapies for spinal cord injury, multiple sclerosis and related
nervous system disorders. For more information, please go to http://www.acorda.com
. About Harris Interactive
Harris Interactive is a global leader in custom market research. With a
long and rich history in multimodal research, powered by our science and
technology, we assist clients in achieving business results. Harris Interactive
serves clients globally through our North American, European and Asian offices
and a network of independent market research firms. Harris