AUSTIN, Texas—Dr. Alexa Stuifbergen, associate dean of The University of Texas at Austin School of Nursing, has received a $1.6 million National Institutes of Health (NIH) grant to continue her studies on improving the quality of life for persons coping with multiple sclerosis.
Stuifbergen has followed nearly 600 men and women with multiple sclerosis in Texas since 1996. Her NIH funding for the research now totals more than $3 million and will continue through 2010.
“Chronic disabling conditions like multiple sclerosis have profound and pervasive effects on the lives of millions of Americans,” said Stuifbergen. “Although rarely addressed, the need for health promotion continues to exist and may be greater in persons living with long-term, incurable conditions than in the general population.”
The purpose of the longitudinal study is to add depth to the knowledge about health promotion in chronic disabling diseases.
“It’s unusual to have this many participants involved in a study for so many years,” Stuifbergen said. “It’s a unique opportunity to examine factors that impact quality of life and functional limitations over time.”
Stuifbergen’s research examines the positive effects of health-promoting behaviors for those with the illness and how people with multiple sclerosis can improve their quality of life.
“We have found that when people practice various health promoting behaviors, including physical activity, stress management and healthy eating habits, it mediates the effects of illness on quality of life,” she said. “We have also learned that people who engage in health-promoting behaviors, regardless of the severity of their limitations or disability, perceive their quality of life as more positive.”
More than 350,000 persons in the United States and two million worldwide live with multiple sclerosis, an unpredictable disease of the central nervous system and the most common neurological disease of young adults. Preventing long-term disability, said Stuifbergen, is the most important goal of treatment and most relevant outcome for persons living with multiple sclerosis.
But, in most cases, people are diagnosed on an out-patient basis with little opportunity to discuss ways they can promote their own health and well being, and remain as active as possible as the disease progresses, said Stuifbergen.
“People need to know the extent to which they can continue to fulfill their responsibilities at work and at home, and how multiple sclerosis may affect their future needs and plans,” she said. “We still know very little about the natural history of multiple sclerosis and, consequently, can offer persons with the condition little guidance about the likely outcome of their disease.”
Only by continuing these longitudinal studies of functional limitations, disability and quality of life can researchers gain critical information about the challenges that persons with multiple sclerosis face and identify what potentially moderates the course of the disease-related limitations, Stuifbergen said.
The research also will explore the effects of perceptions of aging as the participants—now an average age of 54 years old—age with the chronic disabling condition.
Co-investigators on the study include research scientist Heather Becker and Dr. Tracie Harrison, assistant professor of nursing.
For more information contact: Nancy Neff, School of Nursing, 512-471-6504.
