Connecting with a Researcher: Dr. Alexa Stuifbergen discusses her research on individuals living with multiple sclerosis
Posted: March 17, 2014
When Dr. Alexa Stuifbergen was a Ph.D. student studying the impact of chronic illness on families, the connections she made led to more than two decades of work with the MS community.
Many of the people in that study had MS. The initial connection of getting to know their needs, along with a personal connection she had through a friend whose dad had been diagnosed, led to volunteer involvement with the National MS Society, and research studies to better understand health promoting behaviors on multiple sclerosis. Dr. Stuifbergen explains, "Those early connections made me ask, how do you live well within the context of an MS diagnosis? It challenged me to study this. All of my work has been focused on what people can do to help themselves to live the best life possible when they are diagnosed with a condition such as MS."
Of course, Dr. Stuifbergen has seen major changes in how MS is diagnosed, studied and treated in the past 25 years, and she has been on the forefront of some of those changes. In 1996, she began a longitudinal study with almost 900 individuals living with MS, mainly in Texas. Today, she still has more than 400 of those individuals in the study, helping to uncover factors related to the progression of MS.
One outcome, for example, helped to shed light on the role of exercise for individuals living with MS. Two decades ago, those diagnosed were told to rest, but Dr. Stuifbergen’s study, along with many more across the country, showed how important exercise can be in delaying the onset of symptoms and improving the physical, mental and social health of those living with MS.
Another part of the longitudinal study led to Dr. Stuifbergen’s current work. Participants were asked about their perceptions of memory problems and cognitive issues. They found that a majority described concerns over memory but used very few strategies for memory improvement. Other studies have documented that aspects of cognition (attention, information processing speed, new learning and memory, and executive functioning) may be affected in 50–75 percent of those with MS and cognitive symptoms are among the most disabling effects of the disease.
Seeing how big the problem was, and knowing that there were very few validated treatment options available, led her team to develop an intervention. It was based on the best cognitive rehabilitation options for other conditions, but tailored to the needs of MS. The intervention "Memory, Attention and Problem Solving Skills for Persons with MS" (MAPPS-MS) includes three parts:
- Learning compensatory strategies, such as environmental modifications or behavioral strategies, to help individuals adapt in everyday life;
- Focus on aspects of lifestyle that impact cognitive function, such as exercise, sleep and anxiety-reduction; and
- Focus on brain retraining using computer activities to practice skills at home to improve memory, attention and problem solving.
The initial pilot study from 2009–2011 included 61 individuals in the Houston and Austin area, and it demonstrated a statistically significant, large improvement in use of compensatory strategies as well as significant increases in performance on tests of verbal memory and processing speed.
"The results of this study have been very positive. Improving cognitive performance has the potential to help persons with MS stay employed and functioning longer. We don’t want to wait for people to become severely impaired. Through compensatory strategies, we are able to return some function and help individuals live the best that they can," says Dr. Stuifbergen.
The feedback has led to the launch of a new NIH-funded, multi-site trial of the intervention. Dr. Stuifbergen, along with Dr. Heather Becker and Dr. Frank Perez, are currently recruiting 180 individuals over the next three years in Houston, San Antonio and Dallas/Fort Worth for the MAPSS-MS research study. To participate, individuals must be experiencing cognitive problems and have internet access to do the computer practice.
The intervention is largely the same as the 2009 study, except this time they are improving the testing to see if improvement on the neurpsychological tests translates to everyday life. Additionally, they will do a six-month follow up to see if the effects are sustained.
Dr. Stuifbergen is thankful for those who have volunteered for research studies, saying that individuals with MS have been amazing contributors to research endeavors. "Not only are they able to take advantage of new treatments and interventions, but they are making things better for the future. They are advancing the understanding of MS to help everyone across the spectrum," she says.
"I’ve learned so much from the people who have participated in our studies. Their input provides a lot of direction for future studies. We’ve always tried to make our work relevant to what people are experiencing, to reflect the reality of what’s really important to those living with MS."
If you live in the Houston, San Antonio or Dallas area and are interested in participating in the MAPSS- MS study, please call Vicki Kullberg at 800-687-8010 to see if you qualify. There is a $225 compensation for completing the study.
Article originally published on MS Connection.