Activity Pacing, Fatigue, Physical Activity And Quality Of Life In Adults With Multiple Sclerosis

In response to fatigue persons with multiple sclerosis (MS) make several behavioural adaptations, such as resting and limiting activity, sometimes resulting in an unevenly spread activity pattern throughout the day, consisting of short activity peaks followed by long rest periods. These patterns are inefficient and have been linked to increased disability. Activity pacing is a behavioural strategy that is thought to help alter such inefficient patterns, yet little is known about how persons with MS naturally use this strategy to manage fatigue and optimise their daily activities.

PURPOSE: To examine how actively engaged persons with MS are in pacing decisions in daily life and what their perceived difficulty in preventing overactivity is. Also explore relations of this naturalistic pacing behaviour with fatigue, physical activity (PA) and health-related quality of life (HRQoL).

METHODS: 53 persons with MS (median age= 45 ± 10 years) filled in questionnaires on their active engagement in pacing decisions and perceived difficulty in preventing overactivity (5-point Activity Pacing Questionnaire), fatigue (7-point Fatigue Severity Scale), PA (time spent on activities using an adapted SQUASH) and HRQoL (RAND-

12) post rehabilitation, collected within the ReSpAct program, a nationwide multi-centre program aimed at stimulating and promoting an active lifestyle in rehabilitation. The relationships between the variables were examined using hierarchical regression models.

RESULTS: Active engagement in pacing decisions and perceived difficulty in preventing overactivity were high (3.80 ±.90 and 4.00 ± 1.50 respectively). Fatigue was moderately severe (5.78 ± 1.44). HRQoL was fairly good (33.02 ± 10.50). Fatigue was related to low HRQoL (β= -.340; p= .019). No relations were found between active engagement in pacing decisions and fatigue, between active engagement in pacing decisions and PA and between active engagement in pacing decision and HRQoL.

CONCLUSIONS: The lack of associations between pacing and fatigue, PA and HRQoL despite the high engagement in pacing found in this study indicates the varied use of pacing. While some may be using pacing in response to high fatigue, others may be using pacing to optimise their daily activities. Guidance on pacing may lead to successful health outcomes in persons with MS.