Abstract Details

Title Activity monitoring in neuromuscular disease: Successes, challenges, and a path forward

Topic Neuro-rehabilitation

Presentation(s) P5 - Poster Session 5 (5:30 PM-6:30 PM)

Poster/Presentation
Number 7-016

Objective This study evaluated the utility of using a commercially-available activity monitor to quantify the rate of decline in total steps per month in degenerative neuromuscular disorders (NMD). Step quantity was compared to age-matched controls and was correlated to standard measures of motor function.

Background Quantifying motor function can be influenced by the testing environment, the subject’s behavior and general health and well-being on the day of the testing. A more comprehensive and perhaps more meaningful metric would be the person’s ability to complete the required activities of daily living. Monthly step counts could be used as a reasonable surrogate to health and motor abilities.

Design/Methods

Individuals with neuromuscular disorders such as Duchenne muscular dystrophy, limb girdle muscular dystrophy and spinal muscular atrophy as well as age matched peers were enrolled in an activity monitoring study. Subjects were asked to wear the Fitbit Flex 2 monitor daily for 2 years. Individuals with a NMD were evaluated in clinic approximately every 6 months.

Results Individuals with a NMD took significantly fewer steps per day than age matched controls (p<0.001). Intraday variability was extremely high suggesting that a longer recording duration is necessary to accurately quantify abilities. A significant seasonal variation was seen with significantly fewer steps being taken in winter in comparison to all other seasons (p<0.001). When the data were adjusted for the season the NMD cohort averaged a decline of 60 steps per 30 days (p=0.05). As expected average steps was significantly correlated to age, time to run 100 m, time to climb 4 stairs and total NSAA score ( r= 0.823-0.723; p<0.02). This presentation will discuss dropout rates, retention strategies and other practical solutions to using activity monitoring as a measure of motor performance.

Conclusions

Continuous activity monitoring with a commercially-available device shows potential as a reliable outcome measure to quantify motor ability.

Authors/Disclosures
Linda P. Lowes, PT PhD PRESENTER	The institution of Ms. Lowes has received research support from Sarepta Therapeutics.
Natalie F. Miller, PT	Dr. Miller has received personal compensation for serving as an employee of ATOM International. Dr. Miller has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Casimir.
	No disclosure on file
	No disclosure on file
Lindsay N. Alfano, PT (Nationwide Children'S Hospital)	Ms. Alfano has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for ATOM International, Ltd (Amicus Therapeutics, Catabasis, Genethon, Italfarmaco, NS Pharma, Pfizer, PTC Therapeutics). Ms. Alfano has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Sarepta Therapeutics. The institution of Ms. Alfano has received research support from Novartis Gene Therapies. The institution of Ms. Alfano has received research support from Sarepta Therapeutics. The institution of Ms. Alfano has received research support from Audentes Therapeutics/Astellas Gene Therapies. Ms. Alfano has received intellectual property interests from a discovery or technology relating to health care.

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