Evaluating Parkinson's disease patients at home: utility of self-videotaping for objective motor, dyskinesia, and ON-OFF assessments

Abstract

The objective is to test feasibility and utility of home-based videos for assessing Parkinson's disease (PD) patients. As part of a clinical trial, patients opted between coming to the study sites or learning to videotape assessments at home. Those opting for at-home filming completed training on videotape techniques. Ten-minute films were taken at 30-minute intervals over 8.5 hours, 2 and 4 weeks after study entry using a protocol covering most items of the UDPRS motor examination and all Rush Dyskinesia Rating Scale items. After each filming, patients marked their ON/OFF status, based on prior training. We determined the number of patients who elected self-taping and the quality of video segments obtained. To assess ON/OFF patient accuracy, we compared the rater's and patient's assessment of ON/OFF at each time point. Of 12 participants, 10 elected self-videotaping and only 1 time point was missed (99.5% taping compliance). All self-recorded video segments were clear with all protocol elements included. With the exception of one missed ON/OFF rating, patient-based self-ratings occurred on time. Rating ON/OFF, UPDRS, and RDRS assessments for 8.5 hours required 170 minutes by the blinded rater. In spite of patient training, mean ON/OFF concordance between rater and patients was only 64%. At home video-based self-recordings are feasible and allow accurate rater-based ON/OFF assessments. In this group of patients with no or mild fluctuations, in spite of pretrial training, patients were inaccurate in separating ON vs. OFF status.