BACKGROUND: OFF-episodes between levodopa/carbidopa (LD/CD) doses can be burdensome for patients with Parkinson’s disease (PD). New treatments, such as opicapone, have the potential to reduce OFF-time; however, little is known about patients’ willingness to tradeoff the side effects of adjunctive treatments to gain reductions in OFF-time. A survey was developed to identify patient preferences for attributes of oral medications that are added to levodopa or LD/CD regimens to reduce OFF-time for PD patients.
METHODS: The survey was developed based on prior research and the treatment landscape. Input on the survey design came from patient advisors on the study team and through cognitive debriefing interviews with adult patients recruited by the Michael J. Fox Foundation for Parkinson’s Research using the following criteria: self-reported diagnosis of PD; current treatment with LD/CD; and ≥90 mins of total OFF-time per day. The survey presented a series of choices between medications that varied in efficacy (minutes of additional ON-time), potential side effects (more minutes of troublesome dyskinesia, risk of diarrhea, risk of change in urine/sweat/saliva color), and dosing frequency. Results from the interviews will be used to develop an online survey.
RESULTS: Of 15 patients who completed the interviews, 9 (60%) were male; mean age (±SD) was 62±8 years. Although patients were taking 3-6 LD/CD doses per day, 7 (47%) reported >90 mins of OFF-time each day and 5 (33%) took rescue medications for OFF-time. When choosing between hypothetical medicines, patients verbalized their personal reasoning for tradeoffs between efficacy and side effects. When presented with a medication that would provide 1-2 hrs of additional ON-time, 8 (53%) patients always selected adjunctive medicine despite adding another treatment with side effects to their regimen. Some participants were willing to forgo 30-60 mins of additional ON-time to avoid troublesome dyskinesia, diarrhea, or change in urine, sweat, or saliva color.
CONCLUSIONS: Patient feedback provided valuable insights on patient preferences that will be incorporated into a future online survey. Patients indicated that OFF-episodes are not well-controlled with currently available medications, and this research contributes to the literature on patients’ experiences with motor fluctuations to support identification of appropriate treatment strategies for OFF-episodes.
