To evaluate fatigue impact and behavior changes in people with multiple sclerosis (PwMS) 5-6 years after participation in a MS fatigue management program.

Fatigue is a common, disabling, and likely progressive symptom in people with MS. Self-management interventions can improve fatigue impact. Fatigue: Take Control (FTC) is a six-week fatigue self-management program. A multisite randomized controlled trial (n=204) found that FTC did not significantly improve Modified Fatigue Impact Scale (MFIS) scores at program completion or 3 and 6 months later within group or compared to a MS education control program, MS: Take Control (MSTC. However, a 12-month follow-up of a subset (n=74) revealed the FTC group had significantly better MFIS scores compared to their baseline and to the MSTC group. Here we report results from a 5-6 year follow-up, separate from the qualitative analysis report.

We attempted to contact all participants who completed 12 month follow-ups to administer the MFIS and a 17-item questionnaire about behavior changes implemented since program completion.

Thirty-eight participants (15 FTC, 23 MSTC) completed the MFIS and all but one of these (missing 1 from MSTC) completed the behavior change questionnaire. There were no significant differences in MFIS scores within or between groups compared with any other time point or between groups in the number who implemented any of the potential behavior changes.

FTC participants did not report less fatigue impact, nor more behavior changes, 5-6 years later compared to MSTC participants. But, neither group reported greater fatigue than at baseline. Although this result may reflect sampling bias, the stability in fatigue over time in both groups calls into question the belief that fatigue is progressive in all, even most, people with MS. Further longitudinal studies are needed to better understand the time course of fatigue in MS and the duration of fatigue management interventions.