A Glimpse into Physical Activity Profiles of Adults with Facioscapulohumeral Muscular Dystrophy: A Pilot Study



Poster Number: T346


Nicole White, PT, DPT, University of Rochester, Katy Eichinger, PT, PhD, University of Rochester, Michaela Walker, MPH, CCRP, University of Kansas Medical Center, Leann Lewis, MS, University of Rochester Medical Center, Johanna Hamel, MD, University of Rochester, Rabi Tawil, MD, University of Rochester Medical Center, Jeffrey Statland, MD, University of Kansas Medical Center, MOVE Investigators of the FSHD CTRN, FSHD CTRN

Background: Measuring physical activity (PA) within the natural environment can provide details on the impact of facioscapulohumeral muscular dystrophy (FSHD) on day-to-day activities. Derived metrics produced by activity monitors allow for objective measurements of PA. The purpose of this pilot study was to examine PA profiles of individuals with FSHD using waist worn activity monitors.

Methods: In a sub-study of the Motor Outcomes to Validate Evaluations in FSHD study, individuals wore activity monitors for 8 consecutive days following a remote research visit. Descriptive statistics were used to summarize PA profiles including time spent in different activity levels and step count. Correlation analyses were used to examine relationships between PA and function (Timed Up and Go (TUG), 10-meter walk/run (10m), and sit to stand).

Results: 20 subjects were enrolled,19 wore monitors. 13 participants (53.8% males) were included in analysis based on wear compliance. On average [mean (SD)] devices were worn 6.85 (0.56) days. Activity levels varied by minutes – greatest time spent in sedentary (median: 1074.1 minutes), followed by light (164.5), lifestyle (72.1), moderate (22.9), vigorous (0.2), and very vigorous (0.0). Time [median (range)] in moderate-vigorous PA (MVPA) was 23.1 (7.3-89.4) minutes/day, and 161.7 (50.8-626.0) minutes/week. Average daily step counts ranged from 2,344 to 11,993 steps/day, with average daily maximum step counts ranging from 14 to 26 steps/10 seconds. Strong correlations were found between total MVPA and TUG (ρ=-0.764, p=0.002) and 10m (ρ=-0.780, p=0.002), and maximum step count and 10m (ρ=-0.709, p=0.007) and sit to stand (ρ=-0.802, p=0.001).

Conclusion: These findings provide initial information on PA profiles of adults with FSHD. Total MVPA and maximum step counts may prove to be useful parameters. Future studies are needed to examine reliability and validity of these derived metrics, determine their utility in predicting outcomes, and evaluate change over time in individuals with FSHD.