T.P.38: Initial validity and test–retest reliability of ACTIVE-seated (Ability Captured Through Interactive Video Evaluation-seated) as an upper extremity outcome in Duchenne muscular dystrophy

• Published in: Neuromuscular disorders : NMD Vol. 24; no. 9-10; p. 905
• Main Authors: Lowes, L.P., Alfano, L.N., Berry, K.M., Yin, H., Dvorchik, I., Flanigan, K.M., Mendell, J.R.
• Format: Journal Article
• Language: English
• Published: Elsevier B.V 01.10.2014
• ISSN: 0960-8966; 1873-2364
• DOI: 10.1016/j.nmd.2014.06.369

The need for a valid and reliable measure of upper extremity (UE) function in Duchenne muscular dystrophy (DMD) is critical as current tools focus on distal ability, use an ordinal scale, and/or require significant training to use reliably. ACTIVE-seated was developed using the Microsoft Kinect platform. This camera system and gaming interface gathers UE positional data while providing the platform for video games to improve consistency of performance. Our purpose was to determine the validity and test–retest reliability of ACTIVE-seated as an UE tool in DMD. A sample of 40 subjects (mean age 13±3) with DMD (Brooke level 1–5) and 15 controls were tested. Eleven subjects returned for next-day testing. ACTIVE-seated uses skeletal tracking to quantify the UE excursion in the X (left, right), Y (overhead), and Z (forward) planes. The functional reaching volume (FRV) of the area around the subject, encompassing both UE and trunk movement, was reported. The raw data were converted into a percent predicted based on the subject’s UE length to standardize comparisons between subjects and accommodate growth. One hundred percent of predicted would equal the accessible FRV of solely the UE without leaning by the trunk. The FRV of subjects with DMD ranged from 6% to 150% (mean: 69%) of predicted FRV, with controls all reaching well over 100% (mean: 147%). ACTIVE-seated discriminately ranked subjects with DMD by Brooke level and from controls (p<0.001). Test–retest reliability of the ACTIVE-seated between two consecutive days was also excellent (ICC=0.99 p<0.001). Initial reliability and validity suggest that ACTIVE-seated is a promising outcome measure across the spectrum of functional abilities in DMD. The ability of ACTIVE-seated to discriminate even Brooke level 1 from controls indicates this outcome has potential for use in clinical trials in the ambulant population to avoid a gap in data in the event of loss of ambulation. The game format encourages repeatable, maximum effort.