Agreement between Parkinson Disease Home Diary and Observer Assessments before and after Structured Patient Training

Abstract

Objectives. Recent studies showed only fair agreement between observer and patients’ motor state assessments on the Parkinson’s disease (PD) home diary (HD). This could possibly be explained by the patients’ insufficient knowledge about motor fluctuations. Therefore, the study is aimed at investigating the effect of structured training concerning motor fluctuations on the agreement between observer and HD ratings and daily motor state times. Methods. Participants from a previous validation study of the HD were invited back for a study extension. This interventional study consisted of a screening visit including a structured training concerning motor fluctuations and one day of motor ratings onsite during which observer and patient simultaneously and independently evaluated the patient’s motor state every half hour. Results. Observer and 20 patients completed 316 pairs of motor state assessments. The overall agreement was 68% before training and 76% after training ( P = .093 ) and Cohen’s κ increased from .438 to .559 ( P = .320 ). There was no significant improvement in the correlation/reliability of HD-documented daily motor state time when compared with observer ratings. Moreover, before training, the agreement in observed “on with dyskinesias” was 58%, and after training, it was 80% ( P = .074 ). Conclusion. Our structured patient training in motor fluctuations did not significantly improve the agreement between observer and HD or the reliability of daily times spent in the different motor states as an aggregate measure of HD in this PD patient group. However, there are indications of an improvement in the participants’ ability to detect dyskinesias.