More MS news articles for May 2003
MS Society Survey Reveals Lifestyle Impact of Multiple Sclerosis
Patients and Caregivers Find Satisfaction with Medical Community
and Employers, While Interpersonal Relationships and Self Worth Suffer
May 15, 2003
SOURCE National Multiple Sclerosis Society
A new survey of more than 800 people with Multiple Sclerosis reveals
that (as a group) they continue to be hopeful of a medical breakthrough,
and are fighting the good fight. However, coping with a devastating
disease has taken its toll on them at the office and at home.
According to Judith G. Cohen, president of the Greater Delaware Valley
Chapter of the National Multiple Sclerosis Society, sponsor of this groundbreaking
survey, the results paint the portrait of a heroic effort to maintain a
lifestyle and a mental state that is being ravaged by a disease that doesn't
have as high a profile as others.
The survey was split into four segments: home life, social life, work
life, and health/medical issues. Some of the key findings of the
MS typically exerts a significant impact on one's home life.
Developing MS invariably leads to changes in one's social life, but the
extent to which this occurs is largely impacted by one's age and length
of time with the disease.
At least 53% of those surveyed found it necessary to make some changes
in order to continue to live at home comfortably.
At least 20% of the survey population felt it necessary to move to another
residence, due to accessibility issues or to live with a caregiver or in
an assisted living facility.
The vast majority of respondents (82%) use assistive devices (canes, wheelchairs,
walkers, scooters, and stair lifts) in an effort tomaintain mobility.
It is interesting to note that manual devices tend to be more widely used
than mechanical ones. It is presumed that cost plays an important
role in this response.
Not surprisingly, age and length of time with the disease also play a role
in the use of assistive devices. Seventy-one (71) percent of those
under the age of 40 use assistive devices, while 91% of those over 55 rely
on them. There is also a 15-point difference between those diagnosed with
the disease within the past 5 years (77%) and those who have lived with
MS for more than 20 years (92%), in the use of these devices.
Without a doubt, developing MS significantly reduces one's ability to work.
Even for those not forced out of the workplace as a result of developing
MS, having MS often necessitates changes and accommodations.
Nearly 50% of those surveyed believe the onslaught of MS has had some positive
impact on their lives. Of those who responded positively, 87% said
they found inner strength and coping mechanisms not realized before, 61%
made new friends, 53% became involved in new activities, and 61% felt an
improvement in the quality of communication with their significant other.
Conversely, 51% of those surveyed said developing the disease led to reduced
expectations and a self-perceived poorer quality of life. In fact,
those who responded in this manner said they felt like a burden to others
(73%), believed MS reduced their chances of having a fulfilling personal
life (54%), and limited what they think they can achieve (47%).
Those with MS actively treat the disease with medication and therapy, and
their satisfaction level with the primary care community is quite high.
The majority of those surveyed (63%) are currently unemployed, and 67%
of those attribute their unemployed status to developing MS.
Unemployment rates are also age-related: 48% of those under 40 are unemployed
versus 60% of those aged 40-54, and 80% of those 55 and older.
Only 7% of those unemployed take advantage of COBRA, or are even knowledgeable
of COBRA provisions.
The majority of respondents (54%) have applied for Social Security Disability
Insurance (SSDI). Perhaps more important, those who do so are likely
to receive it. Only 20% have had their requests denied, either because
they didn't have enough work credits, were deemed able to work, or due
to an inability to meet income requirements.
Even for those who are able to continue working once diagnosed (37%), MS
creates difficulties and necessitates work-related changes. Some 25% changed
jobs after being diagnosed. Nearly half (46%) agree that MS has reduced
their chance for success at work.
More than 4 of 5 respondents (81%) disclose their diagnosis in the workplace,
and 94% of those speak glowingly of the support they received from co-workers
and management after doing so. Some 34% required/received changes
to their work schedule, modifications to their workspace, and/or the location
of the work being performed as part of this support.
"Society's lack of awareness or knowledge of MS may also contribute to
the issues facing people contending with this devastating disease," says
Cohen. "Almost all respondents said most people they come in contact with
don't know much about MS. That's something we have to address, and
sharing the results of this survey is a start."
Most survey participants (86%) currently take MS-related medications and/or
are undergoing therapy. (There is a drop-off based on age, from 90%
of those under 55 to 74% of those older than 55.)
Nearly all respondents (90%) have used an injectable drug, with 79% doing
so at the time of the survey. Some 70% engage in non-drug therapies
such as walking, stretching, strength training, cycling, yoga, swimming
Only 35% of those with MS function without help from another adult or caregiver.
Not surprisingly, the likelihood of needing assistance increases over time.
Almost two-thirds (65%) of respondents believe drug companies have been
successful in developing treatments and therapies for MS, while only 24%
feel the government allocates sufficient money for MS research.
Local medical care providers get high scores for ease of accessibility
(89%), ability to offer appropriate referrals (86%), being up-to-date on
medical techniques and therapies for MS (65%), and knowledgeable about
insurance programs and pharmaceutical benefits (65%).
Individuals with MS do have concerns about gaps in service, especially
as it relates to respite care (62%), in-home health services (54%), and
enough coverage offered by health insurance and pharmaceutical programs
Linda McAleer, chairman of the local chapter's Board of Trustees and
president of The Melior Group, adds that the chapter is creating new programs
based on the results of this survey.
"We will expand many of our services to address the concerns
of both the members and their caregivers," she said. "For example,
we will create a special employment newsletter that would spotlight COBRA,
SSDI, insurance issues, and disclosure advice. We will provide more
information on respite care and funding, and particular attention will
be given to increasing awareness of MS as a disease."
A profile of the respondents shows that women (82%) between the ages of
40 and 54 (74%), who are married and no longer have children living at
home (64%) replied to the survey. The typical participant has also had
the disease for 12 years.
The Melior Group, a Philadelphia research firm, conducted the benchmark
survey on behalf of the Greater Delaware Valley Chapter of the National
MS Society in two phases -- telephone and mail -- on a pro bono basis.
A total of 850 responses (a response rate of 29%) were received by the
Web Site: http://www.pae.nmss.org
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