The Relative Merits of an Individualized Versus a Generic Approach to Rating Functional Performance in Childhood Dystonia

Aims: The Performance Quality Rating Scale (PQRS) is an observational measure that captures performance at the level of activity and participation. Developed for use with the Cognitive Orientation to daily Occupational Performance (CO-OP), it is a highly individualized approach to measurement. CO-OP is currently being studied in childhood-onset hyperkinetic movement disorders (HMD) and deep brain stimulation. The purpose of this study was to compare two different approaches to rating performance, generic (PQRS-G) and individualized (PQRS-I), for children with childhood-onset hyperkinetic movement disorders (HMD) including dystonia.

Method: Videotaped activity performances, pre and post intervention were independently scored by two blind raters using PQRS-G PQRS-I. Results were examined to determine if the measures identified differences in e performance on goals chosen by the participants and on change scores after intervention. Dependent t-tests were used to compare performance and change scores.

Results: The two approaches to rating both have moderate correlations (all data: 0.764; baseline: 0.677; post-intervention: 0.725) and yielded some different results in capturing performance. There was a significant difference in scores at pre-intervention between the two approaches to rating, even though post-intervention score mean difference was not significantly different. The PQRS-I had a wider score range, capturing wider performance differences, and greater change between baseline and post-intervention performances for children and young people with dystonic movement.

Conclusions: Best practice in rehabilitation requires the use of outcome measures that optimally captures performance and performance change for children and young people with dystonic movement. When working with clients with severe motor-performance deficits, PQRS-I appears to be the better approach to capturing performance and performance changes.