P232: Participant Compliance with an Electronic Parkinson’s Disease Home Diary Measuring Motor Fluctuations and Dyskinesia
Poster Presenter
Laura Khurana
Sr Principal Scientific Advisor
Thermo Fisher Scientific United States
Objectives
Our objective was to measure participant compliance with completing an electronic Parkinson’s Disease (PD) Home Diary, given the intensive and time-sensitive requirement to report motor fluctuations/dyskinesia every 30 minutes for 3 days, presenting challenges for compliance and data reliability.
Method
Ten PD participants (Hoehn & Yahr stage 1–3 in ON state, =75% diary concordance of PD symptoms with a clinical evaluator) were instructed to complete the electronic PD Home diary every 30 minutes for at least 3 days. Date/time stamps of diary submissions were analyzed to determine compliance.
Results
All participants (N=10, 100.0%) completed at least 72 continuous hours with no missing time points, where for every 30-minute interval they reported their motor fluctuation status or dyskinesia for that half hour period (options were: ASLEEP, OFF, ON without dyskinesia, ON with non-troublesome dyskinesia, ON with troublesome dyskinesia). Six participants (N=6, 60.0%) completed at least three “complete days” (defined as all 48 timepoints from 6 AM to 6 AM the following day) as instructed, with no missing timepoints. On average, participants completed their diaries (excluding asleep time) 129 minutes after the timepoint ended (reporting delay). Three participants (N=3, 30.0%) completed their diaries with an average reporting delay of less than an hour. Three participants (N=3, 30.0%) completed their diaries with an average reporting delay of one to two hours. One participant (N=1, 10.0%) completed their diaries with an average reporting delay of two to three hours, two participants (N=2, 20.0%) completed their diaries with an average reporting delay of three to four hours, and one participant (N=1, 10.0%) completed their diaries with an average reporting delay of just over four hours. For reporting frequency, on average participants completed their diaries less than every two hours.
Conclusion
In conclusion, PD patients are capable of completing an electronic PD Home Diary to measure daily motor fluctuations and dyskinesia, showing good compliance, with most participants completing the diary on average less than every two hours. Actual compliance with paper PD Home diaries remains unknown due to a lack of empirical evidence, but electronic diaries offer the benefit of monitoring actual compliance in real time, as well as alarms to help improve compliance.
