Technology Plays Critical Role In Lives Of People With Multiple Sclerosis
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, according to a new survey.
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 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.
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.