Development of Duchenne Video Assessment scorecards to evaluate ease of movement among those with Duchenne muscular dystrophy

Abstract

Background Patients with Duchenne muscular dystrophy (DMD) adopt compensatory movement patterns as muscles weaken. The Duchenne Video Assessment (DVA) measures patient ease of movement through identification of compensatory movement patterns. The DVA directs caregivers to video record patients performing specific movement tasks at home using a secure mobile application, and DVA-certified physical therapists (PTs) score the videos using scorecards with prespecified compensatory movement criteria. The goal of this study was to develop and refine the DVA scorecards. Methods To develop the initial scorecards, 4 PTs collaboratively created compensatory movement lists for each task, and researchers structured the lists into scorecards. A 2-round modified Delphi process was used to gather expert opinion on the understandability, comprehensiveness, and clinical meaningfulness of the compensatory movements on the scorecards. Eight PTs who had evaluated ≥50 patients with DMD and participated in ≥10 DMD clinical trials were recruited for the panel. In Round 1, panelists evaluated compensatory movement criteria understandability via questionnaire and tested the scorecards. In Round 2, panelists participated in an in-person meeting to discuss areas of disagreement from Round 1 and reach consensus (≥75% agreement) on all revisions to the scorecards. Results During the Round 1 revisions to the scorecards, there were 67 changes (44%) to the wording of 153 original compensatory movement criteria and 3 criteria were removed. During the Round 2 revisions to the scorecards, there were 47 changes (31%) to the wording of 150 compensatory movement criteria, 20 criteria were added, and 30 criteria were removed. The panel reached 100% agreement on all changes made to scorecards during Round 2. Conclusion PTs with extensive experience evaluating patients with DMD confirmed that the compensatory movement criteria included in the DVA scorecards were understandable, comprehensive, and clinically meaningful.

Development of an Infantile GM2 Clinical Rating Scale: Remote Assessment of Clinically Meaningful Health-Related Function

“…Individual clinician feedback was first gathered without the influence of other clinicians, then through sharing perspectives in focus groups to guide critical item and scale changes. This 2-step process of gathering and assimilating expert clinician feedback on the scale informed by previous scale development work by Contesse et al 35 is an additional strength of this study. We found that expert clinicians corroborated caregiver perceptions of clinically meaningful health-related functions in infantile GM2.…”

Home‐based video assessment of ease of movement for patients with Duchenne: Interviews with physical therapists to select movement tasks

“…The COVID-19 pandemic highlighted the need for clinical outcome assessments that can be administered remotely (Goldsack After the DVA movement tasks were finalized, a modified Delphi process was conducted with experts to identify and modify the movement compensations to include on the scorecards (Contesse et al, 2022). The DVA has been found to have high inter-and intrarater reliability, and cross-sectional construct validity has been established (Contesse et al, 2021).…”

“…Data monitors review videos to ensure standardized data quality parameters are met, and caregivers are asked to re‐record videos that would not be able to be scored by a physical therapist. DVA‐certified physical therapists score the videos using scorecards (example provided in Figure 1) with prespecified compensatory movement criteria (Contesse et al., 2022). The DVA can evaluate patients with DMD at any point in their disease progression, and patients are assigned movement tasks based on functional status.…”