Abstract
Date Presented 4/7/2016
This multimethod, time-series pilot study evaluated a digitally delivered, self-guided fatigue management resource for people with multiple sclerosis. Results indicated increases in self-efficacy; reductions in the effect of fatigue; and perceived shifts in fatigue management knowledge, expectations, and behavior.
Primary Author and Speaker: Marcia Finlayson
Contributing Authors: Julie Petrin, Nadine Akbar, Karen Turpin, Penelope Smyth
PURPOSE: To evaluate whether a digitally delivered, self-guided fatigue management resource for people with multiple sclerosis (MS) increases their confidence in their ability to manage fatigue and encourages them to monitor symptoms, set management goals, and use available resources.
RATIONALE: Of people with MS, 70%–90% experience fatigue as a result of their disease. Researchers have documented the disruptive nature of fatigue on daily life and sought ways to minimize its negative impact. Although there are a number of fatigue management interventions available for people with MS, all of them require involvement in a structured program. For some people, these programs may not be accessible or consistent with their preferred learning style or the underlying factors contributing to their fatigue. Therefore, an interactive, self-guided fatigue management resource was developed for use on a personal computer and then examined for its utility and outcomes.
DESIGN: This pragmatic pilot evaluation used a multimethod, time-series design.
PARTICIPANTS: People with MS between the ages of 18 and 65 yr were recruited from two sites in Canada. Key eligibility criteria included access to a computer on which to use the resource, an average Fatigue Severity Scale Score between 2.0 and 5.0 (i.e., mild to moderate fatigue), ability to read English, and absence of other comorbid conditions that may influence fatigue management. A total of 35 individuals were enrolled, and 23 fully completed baseline, 3-wk, and 3-mo data collection points.
METHOD: Baseline data collection included a structured interview to collect demographic and disease-related information and descriptions of current fatigue management strategies. This interview also included the administration of three validated scales: Patient Determined Disease Steps (PDDS), the Modified Fatigue Impact Scale (MFIS), and the Lorig’s Self-Management Efficacy Scale (SMSE). Three-week follow-up involved a semistructured interview to obtain participants’ perspectives on the utility of the fatigue management tool. The 3-mo follow-up included the readministration of the validated scales and the semistructured interview.
ANALYSIS: Changes in the scores on the MFIS and the SMSE were evaluated using paired t tests after imputing missing 3-mo values for 12 participants using last observation carried forward. Qualitative data from the semistructured interviews were analyzed using the methods of interpretive description.
RESULTS: Participants experienced an increase in self-efficacy (p = .05) and a reduction in all three subscales of the Modified Fatigue Impact Scale (physical, p = .04; cognitive, p = .007; psychosocial, p = .008). Qualitative findings uncovered shifts in knowledge, in expectations about fatigue, and in fatigue management behaviors. Participants recommended several changes to the resource to improve its utility.
DISCUSSION: People with MS who experience mild to moderate fatigue may benefit from a digitally delivered, self-guided fatigue management tool. Revisions to the tool are needed before a full trial is conducted.
IMPACT STATEMENT: Many people with MS do not receive occupational therapy services to manage their fatigue despite its disabling impact. A digitally delivered, self-guided fatigue management resource may increase access to fatigue management knowledge and skills among people with MS and enable them to reduce the impact of this symptom in everyday life.