OHSU-Developed Course to Help MS Patients Manage Fatigue
01/15/04 Portland, Ore.
Cinda Hugos, M.S., P.T., and Lois Copperman, Ph.D., O.T.R., physical and occupational therapists, respectively, at OHSU's Multiple Sclerosis Center of Oregon based in the School of Medicine's Department of Neurology, created "Fatigue: Take Control!" to give MS patients comprehensive information on treatment and management of fatigue.
The program is based on standards from the Multiple Sclerosis Council for Clinical Practice Guidelines, including "Fatigue and Multiple Sclerosis: A Clinical Practice Guideline for Professionals" and "Fatigue: What You Should Know - A Guide for People with Multiple Sclerosis." Hugos and Copperman served on the MS Council and expert panels that developed the international guidelines.
"Fatigue is the most common problem in MS," Hugos said. "Half of the people with MS report fatigue is their most debilitating symptom." The causes of MS fatigue are unknown, but they are thought to be related to the inflammatory process of MS and central nervous system damage resulting from the disease.
Despite the availability of information on fatigue, treatment is still inconsistent and less than optimal, "so we felt that providing a video-based series that really specified the treatment options would be a useful tool for people with MS," she said. Although there are medications to treat MS fatigue, "they generally only reduce the fatigue somewhat. Effectively managing the symptom usually involves making lifestyle choices."
The first video in the series addresses a number of "secondary" factors that frequently increase the fatigue of people with MS, including sleep problems, depression, weakness and poor nutrition. Medically managing these problems may help reduce overall fatigue.
"Usually, after people take care of those things, they are still left with fatigue - MS fatigue," she said. "And with that, they need to make a lifestyle adjustment. Making changes in different aspects of life can make a big difference."
That's where "Fatigue: Take Control!" comes in. A central theme in the course is emphasizing the importance of making a commitment to change, particularly in attitudes, behaviors and environments, to help people take control of fatigue.
The course teaches those with MS how to look at their daily energy "expenditures" in an organized fashion, and how to use their energy effectively to meet their goals.
"It talks about the concept of banking and budgeting so that you can save energy much like you save money," Hugos said. "Taking a nap can be an investment in your energy account. Walking across a room or down the hall is an expenditure from your account. Organizing a task to reduce long-distance walking, for instance, can mean you have energy left for the next activity."
The National Multiple Sclerosis Society produced, published and is distributing the program, including five 15- to 20-minute videos, participant workbooks and instructor manuals, with an unrestricted educational grant from Teva Neuroscience, which produces an MS disease-modifying medication.
Local NMSS chapters will offer the six-week course that involves one- to two-hour sessions, including video viewings, group discussions, individualized goal setting, and workbook and homework activities. Society staff members or trained volunteers will teach the course, which contains advice from experts in MS care, including Dennis Bourdette, M.D., interim chairman of the Department of Neurology at OHSU and director of the MS Center of Oregon. There also are vignettes from about 20 MS patients primarily from OHSU and the Portland Veterans Affairs Medical Center.
A focus of the group course is the activity diary. Its completion is emphasized as an integral part of the fatigue management process. Patients are asked to use it to find patterns of fatigue and reveal "cause-and-effect" relationships. They also will use it to establish goals and priorities for their daily activity schedules.
"People are often spending a lot of time and energy on things that are really not important to them," Hugos said. The diaries help patients recognize "what they actually are doing with their energy, and this is usually surprising to them. By making changes, they can spend their limited amount of energy in ways that are most important to them."
The course teaches patients how to start or change an aerobic or endurance exercise program to reduce fatigue. It also covers environmental changes that can be made at home and work, including ways to address some of the posture and ergonomic issues of standing and sitting that contribute to the condition.
"It means having work stations at home and work that fit you as an individual, not an ergonomic work station in the general sense, but an ergonomic work station in the real sense," Hugos said, "How can you be more efficient with the things you do at home? For example, do you have to stand when you chop up vegetables? Could you sit? Could you buy precut vegetables?"
In general, the course provides a wealth of suggestions and ideas for making effective changes and managing fatigue. "Lois and I have helped hundreds of people manage their fatigue so they can continue to enjoy things that are important to them," she said. "Learning that fatigue can be managed gives people a sense of control."
The Oregon chapter of the NMSS will offer "Fatigue: Take Control!" in the near future.