SX26 Development of An Interactive Fatigue Education Resource for Persons With MS

Thursday, May 30, 2013
Karen VL Turpin, PhD Student, MSc, BScN , Public Health Sciences, University of Alberta, Edmonton, AB, Canada
Nadine Akbar, PhD Candidate, MSc , Hospital for Sick Children, University of Toronto
Marcia Finlayson, PhD, OTR , School of Rehabilitation Therapy, Queens University, Kingston, ON, Canada

Background: Fatigue is a common and disabling symptom of multiple sclerosis (MS), which negatively affects employment and daily activities. Several pamphlets and websites are available to educate people with MS about fatigue. Despite the comprehensive nature of some of these resources, many are limited in their ability to enable persons with MS to personalize this information and translate it into action.

Objectives: We set out to develop an interactive fatigue education resource that would allow persons with MS to take a more personalized and active approach to learning about and managing their fatigue. This resource includes interactive ways to evaluate fatigue, how and when to communicate with others about fatigue, including healthcare providers, and where to go for help. This tool also allows persons with MS to identify what factors may be contributing to fatigue (e.g., depression, sleep disorders, medications, lack of physical activity, and/or mental exertion). Based on a self-evaluation process, people with MS are then directed to ideas and strategies best suited to dealing with those factors most relevant to their own lives, based on current evidence. Throughout the entire presentation, people with MS are guided to set realistic and attainable goals for instituting changes in their lives that could help manage their fatigue.   

Methods: The research literature was searched on the assessment of fatigue and sources of fatigue (primary and secondary factors). Based on findings, an interactive Microsoft PowerPoint® presentation was created for people with MS. Depression, sleep disorders, medications, lack of physical activity, and mental exertion were described in detail regarding how they contribute to fatigue and what strategies could be used to address these factors. Examples of practical fatigue management goals were provided, along with links to apps, programs, and other resources that people with MS might find useful for actually creating change.  In addition, information about when to seek help for each particular source of fatigue was included. The four most useful energy management strategies identified through the literature review were also included in the presentation as ways to address both primary and secondary fatigue.

Results: Not applicable.

Conclusions: The hope of this new interactive fatigue education resource is that it will allow people with MS to self-monitor the most likely sources of their fatigue and select potential management strategies given their specific personal, disease, and environmental characteristics.  It will also help them to recognize when it is appropriate and necessary to seek health care assistance.  The resource is available on CDs and flash drives for easy distribution within MS clinics.