MS Technology Collaborative Launches Landmark Study and New Snapshot Tool for People with MS

Libraries Medical News Life News (Social and Behavioral Sciences)   Keywords MULTIPLE SCLEROSIS, DISABILITIES, ASSISTIVE TECHNOLOGY,VISION LOSS Contact Information Available for logged-in reporters only Description According to a new survey released this week in conjunction with the National MS Society's National Conference, many people living with multiple sclerosis (MS) who experience visual, dexterity, and cognitive challenges report that technology plays a vital role in helping them live with the disease. However, relatively few are using the assistive technologies that could help them overcome many of these challenges.

Newswise �?According to a new survey released this week in conjunction with the National MS Society's National Conference, many people living with multiple sclerosis (MS) who experience visual, dexterity, and cognitive challenges report that technology plays a vital role in helping them live with the disease. However, relatively few are using the assistive technologies that could help them overcome many of these challenges.

The survey, which included a representative sample of 2,390 Americans with MS, is the most comprehensive examination ever of the role of technology among people with MS. It is also the first major initiative of the MS Technology Collaborative, which was formed in March 2007 by Bayer HealthCare Pharmaceuticals, Microsoft, and the National Multiple Sclerosis Society to better understand how people with MS use technology and to connect them to information and resources to help move their lives forward and manage their disease. A project steering committee of people with MS from across the country oversees the efforts of the MS Technology Collaborative to help ensure that the outcomes from the project address unmet needs of the MS community.

Technology is moving lives forward, but more can be done
Seventy percent of people surveyed said they are interested in keeping up with the latest technology, and nearly half agreed that "technology plays a vital role in helping me live with MS." Those with more severe types of MS, and those facing more pronounced visual, fatigue, cognitive, speech or dexterity challenges place even higher importance on technology in helping to move their lives forward and in staying connected.

But when asked if they actually use assistive technology that could make everyday tasks easier, few people indicated they are taking advantage of these special tools: -- Thirty-three percent of respondents said they have trouble typing on a standard computer keyboard, but only 5 percent said they've made related adaptations, such as using an alternative keyboard or a voice recognition program. -- Thirty percent said they have trouble reading text on a standard screen, but only 6 percent have made adjustments to the computer settings such as increasing font size or using screen magnifiers. "When I was first diagnosed with MS, one of my biggest fears was not knowing how MS would affect me or how to prepare for the challenges of such an unpredictable disease," said Keith, a business transformation analyst in Norwalk, Conn. "Now that I've been living with MS for 14 years, I've learned that there are a lot of adaptive technologies - like voice recognition software and screen magnifiers - that help me pursue the same goals I had before my diagnosis."

Technology on the job
The survey reinforced the important role technology plays in maintaining a professional career:
-- Nearly 40 percent of respondents who are employed agreed that technology makes it possible for them to keep working with their disease.
-- Nearly half (44 percent) of respondents have had to change their employment status, including switching from full-time to part-time or leaving work altogether, as a result of MS symptoms. Yet very few took advantage of adaptations that might have helped them remain in the workforce: only 12 percent asked their employers for more ergonomic equipment, tools, and furniture, and just 5 percent requested changes to the technology they use.

Technology connects people
The survey also demonstrated how people with MS rely heavily on technology to connect with others-even more so than the general population:
-- Ninety-three percent of respondents use computers versus 80 percent of the general population.*
-- Ninety-three percent use the Internet versus 75 percent; 91 percent use cell phones versus 69 percent.*
-- When asked how technology keeps people with MS connected to important people in their lives, 67 percent of those surveyed said they were satisfied with its role, and 53 percent of those who use the Internet said that the Internet helps them be their own advocate with MS.
-- * The general population data is derived from the Simmons National Consumer Survey, Spring, 2006.

Opportunity to educate and inform Despite the benefits of technology, people with MS may not be taking advantage of newer technologies for the following reasons: -- Approximately one-third (33 percent) of those surveyed said MS makes it harder to learn to use new technology.
-- More than half of respondents (56 percent) said that better information about what tools and resources are available to them would make it easier to make changes.
-- Forty-eight percent cited affordability as a barrier to using technology-even though many adaptive technologies are actually standard features of the average computer.

"Living with MS can be easier with the use of adaptive and accessible technology resources," said George H. Kraft, M.D., M.S., University of Washington Professor of Rehabilitation Medicine, Adjunct Professor of Neurology, and Director of the Western Multiple Sclerosis Center. "This survey establishes the vital role that technology can play in the lives of people with MS, including keeping them connected to their communities and social lives and helping to make important treatment and lifestyle decisions."

To inform people with MS about technology resources and how to stay connected, the MS Technology Collaborative maintains a Web site called MyMSMyWay.com. The Collaborative recently launched a personalized, interactive, Web-based program called "Snapshot." The goal of this tool, available at http://www.MyMSMyWay.com, is to help people with MS use existing technology to fulfill their goals and to demonstrate how technology can adapt to their ever-changing needs. Visit MyMSMyWay.com to view "Snapshot" and other resources developed by the Collaborative.

About MS
MS is an unpredictable neurological disease that most often is diagnosed in people between the ages of 20 and 50. MS can cause problems with walking or maintaining balance, visual impairment (optic neuritis), lapses in memory, inability to solve problems or pay attention for long periods of time, pain, sexual dysfunction, spasticity, depression or mood swings, and disturbances in bladder or bowel function. These problems might be permanent, or they might come and go without warning. MS affects an estimated 400,000 people in the United States. While there is no cure, early and effective treatment is an important component of helping to control its progression.

About the Survey
StrategyOne, an applied-research consulting firm conducted the study "Staying Connected: An Investigation of How Technology Affects People Living with MS" among 2,390 American adults with MS. The survey was implemented via online and telephone, depending on the preference of the respondent, from May 8, 2007, through June 6, 2007, using the field services of Harris Interactive Service Bureau. The margin of error for the total sample (N=2390) is plus or minus 1.98 percentage points at the 95 percent confidence level.

About the MS Technology Collaborative
The MS Technology Collaborative's vision is to provide people with MS information resources and tools to create a connection between technology, community, and treatment options so they can stay connected to the world. The MS Technology Collaborative's membership includes Bayer HealthCare Pharmaceuticals, a pharmaceutical company that has been at the forefront of MS therapy development, starting with the introduction of the very first therapy for relapsing remitting MS and continuing with its innovative treatments in development today; Microsoft Corp., a global technology leader; and the National Multiple Sclerosis Society, who leads the way in support of MS research, programs and services, and MS advocacy for people living with MS.

About the Participating Organizations
Bayer HealthCare Pharmaceuticals Inc.
Bayer HealthCare Pharmaceuticals Inc. is the U.S.-based pharmaceuticals unit of Bayer HealthCare LLC, a division of Bayer AG. One of the world's leading, innovative companies in the healthcare and medical products industry, Bayer HealthCare combines the global activities of the Animal Health, Consumer Care, Diabetes Care, and Pharmaceuticals divisions. In the United States, Bayer HealthCare Pharmaceuticals comprises the following business units: Women's Healthcare, Diagnostic Imaging, Specialized Therapeutics, Hematology/Cardiology and Oncology. The company's aim is to discover and manufacture products that will help improve human health worldwide by diagnosing, preventing and treating diseases.

National Multiple Sclerosis 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 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 380 research projects around the world. We are people who want to do something about MS now. Join the movement at http://nationalmssociety.org. Studies show that early and ongoing treatment with an FDA-approved therapy can reduce future disease activity and improve quality of life for many people with multiple sclerosis. Talk to your health care professional and contact the National MS Society at or 1-800-344-4867 to learn about ways to help manage multiple sclerosis and about current research that may one day reveal a cure.

Microsoft Accessibility Business Unit
For nearly 20 years, Microsoft has focused on developing accessible technology for everyone, including individuals who experience the world in different ways because of difficulties or disabilities. Accessible technology makes the computer more comfortable and easier to see, hear, and use. More information about accessibility and Microsoft can be found at http://www.microsoft.com/enable/.