The Parkinson's Disease Foundation and the Davis Phinney Foundation jointly fund new study

Aug 19 2009

The Davis Phinney Foundation, a non-profit organization dedicated to improving the lives of people with Parkinson's disease (PD) today, announced that it has awarded four Parkinson's disease research centers with support to conduct a landmark study on the long-term changes in quality of life and mobility that occur in people with PD. The results of this research will help to advance the understanding of how interventions, such as exercise, impact changes in quality of life and mobility over the course of the disease.

The study, funded by the Davis Phinney Foundation in partnership with the Parkinson's Disease Foundation, will follow 200 people with PD for at least two years using a series of performance-based measures and patient-based self-report questionnaires to examine walking ability, balance, disease-specific impairments and quality of life. Study sites include: the University of Utah, Boston University, University of Alabama at Birmingham, and Washington University in St. Louis. Interim study findings will be available in 2010.

While much is known about how neurological symptoms change over the course of the disease in people with PD, very little is known about the impact that disease progression has on day-to-day function and quality of life. "This study addresses the critical need to understand the ways in which mobility and quality of life decline for people with PD over a long period of time," said Lee Dibble, Ph.D., PT, lead study investigator and assistant professor at the University of Utah Department of Physical Therapy. "There is a growing body of research evidence that demonstrates the benefits of exercise in improving walking, strength, flexibility and quality of life in people with PD. In order to appreciate the potential impact that exercise may have on improving mobility and quality of life, we need to understand more about the natural changes that occur in mobility and quality of life over time."

A recent survey conducted by the Davis Phinney Foundation found that communication about quality of life between people with PD and their treatment providers is lacking. Among findings, while 81 percent of people with PD surveyed said they believed that exercise can slow disease progression, less than half of those surveyed (40 percent) reported discussing their exercise with their physician (i.e., neurologist or movement disorder specialist) within six months of diagnosis, and almost one in five (19 percent) said they never discussed exercise with their physician. Further, while almost all respondents (99 percent) reported discussing medication with their physician, just over half discussed depression (52 percent), and only 33 percent discussed nutrition. Full survey findings are available at www.davisphinneyfoundation.org.

"The goal of the Davis Phinney Foundation is to provide information and tools that people living with Parkinson's can use to live well with Parkinson's disease today and in the future," said Amy Howard, Executive Director of the Davis Phinney Foundation. "This study will provide a much needed and comprehensive look at what happens to people with PD over time so that we can understand the impact of exercise and other programs and treatments on improving the quality of their lives. today."

As the worldwide life expectancy increases, the number of individuals with PD over age 50 in the world's most 10 populous countries is expected to double from approximately 4.5 million in 2005 to 9 million by 2030. These numbers highlight the importance of including programs and activities such as exercise, to improve movement, function and quality of life.

"The Parkinson's Disease Foundation is delighted to join the Davis Phinney Foundation in funding this study," said Robin Anthony Elliott, Executive Director of the PDF. "The study will provide welcome information on the natural history of PD, and the PD community will widely benefit from the results."

www.davisphinneyfoundation.org