More MS news articles for May 2003

New National 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

http://www.prnewswire.com/cgi-bin/stories.pl?ACCT=104&STORY=/www/story/05-15-2003/0001947837&EDATE=

May 15, 2003
PRNewswire
Philadelphia
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 survey include:

MS typically exerts a significant impact on one's home life.

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.

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.

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%).

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.

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.

Those with MS actively treat the disease with medication and therapy, and their satisfaction level with the primary care community is quite high.

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 and aerobics.
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 (50%).

"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."

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 chapter.

Web Site: http://www.pae.nmss.org