P.201Home-based video assessment of the quality of movement of patients with Duchenne: scoring scale development

Abstract

Boys with Duchenne muscular dystrophy (DMD) adopt compensatory movement patterns when accomplishing daily tasks to maintain independence in the face of increasing muscle weakness. The Duchenne Video Assessment tool provides a way to document and quantify change in compensatory movements over time in a standardized manner, thereby evaluating an aspect of disease progression meaningful to patients: ease of movement. Caregivers video record patients doing specific movement tasks at home using a secure mobile application. Physical therapists rate the quality of movement in each video using scorecards with prespecified lists of compensatory movements. Physical therapists receive training in scoring each movement task video. We developed a rigorous multi-stage process for developing the scoring scales for 15 movement tasks for ambulatory and non-ambulatory boys with DMD. In a longitudinal study of 10 healthy boys and 40 boys at varying stages of DMD, caregivers collect video data of boys performing specific movement tasks at home. Caregivers received training in conducting and recording tasks, including how to standardize lighting, clothing, surfaces, and set-up. Caregivers submit videos using a mobile application. Videos are de-identified by facial blurring. We currently have baseline video data for all study participants, and it is being used to inform the development of the 15 scoring scales in a multi-stage process. In stage 1, 4 DMD physical therapists watched the baseline video data for each task and reached consensus on preliminary compensatory criteria lists. In stage 2, we structured the preliminary compensatory criteria lists into scorecards. Each scorecard accounts for linked criteria. In stage 3, we are conducting a Delphi panel with 8 expert DMD physical therapists to reach consensus on all 15 scorecards. In stage 4, we will test the reliability and validity of the scorecards using the baseline and follow-up data from the longitudinal study.