Study Being Used Worldwide to Improve Lives of People with MS

Newswise — An RTI International study of programs and policies needed to enhance the quality of life for people with multiple sclerosis (MS) is being used around the world to benefit those with the disease.

One year after its launch, "Principles to Promote the Quality of Life of People with Multiple Sclerosis" has been downloaded almost 20,000 times, an average of 54 times per day, by individuals and organizations worldwide.

The study, which was conducted by RTI for the Multiple Sclerosis International Federation, established a set of "Quality of Life Principles" that are being adopted to promote and advocate programs that enhance quality of life for people with MS.

"Many people with MS have difficulties meeting society's fast-paced demands, particularly at work," said Michael Trisolini, RTI's co-principal investigator for the study. "The Quality of Life Principles are having a significant impact by helping MS societies to enhance the programs and services they offer as well as providing individuals with the tools they need to advocate for better policies that will help improve their lifestyles."

As a result of the report, the U.S. National MS Society is revamping its measurement systems so that all activities, programs and services address one or more of the Quality of Life Principles. The society also is using the principles as a guide and foundation for its strategic direction.

During the past year, the Multiple Sclerosis International Federation and national MS societies have circulated the 34-page report worldwide to governments, for-profit and nonprofit health and social service providers, employers and advocacy organizations. The report is available in English, Spanish, French and German.

The Quality of Life Principles include providing scheduling flexibility and adaptive technology in the workplace and in educational settings; improving the accessibility of public buildings and public transportation systems; and providing more specialized training for family members and other caregivers of people with MS.

About 2.5 million people worldwide have MS, a chronic and, at times, disabling disease of the central nervous system. Symptoms include problems with muscle control and strength, vision, fatigue, balance, sensation and mental function.

To arrive at the principles, RTI co-principal investigators, Trisolini and Joshua Wiener, Ph.D., and their research team, conducted interviews with experts globally, including neurologists, other health care providers, administrators of MS programs and people with MS. They also carried out a comprehensive review of evidenced-based literature on the disease.

About RTI International RTI International is dedicated to conducting research and development that improves the human condition by turning knowledge into practice. With a worldwide staff of more than 2,500, RTI offers innovative research and technical solutions to governments and businesses worldwide in the areas of health and pharmaceuticals, education and training, surveys and statistics, advanced technology, democratic governance, economic and social development, energy, and the environment. The second largest independent nonprofit research organization in the United States, RTI maintains nine offices in the U.S., five international offices, and one international subsidiary, as well as project offices around the world. For more information, visit http://www.rti.org.