BACKGROUND AND SIGNIFICANCE: Advanced practice nurses (APNs) are often the primary healthcare point-of-contact for patients with Parkinson’s disease (PD). As such, they may be the first to recognize when patients are experiencing motor fluctuations. With this awareness, they can help patients as follows: 1) better describe to their medical team the negative impacts that PD has on their daily lives; 2) provide information to patients about medications that may help with “OFF” episodes. New oral adjunctive treatments, such as once-daily opicapone, have been shown to reduce the duration of “OFF” time in clinical trials. Patient perspective on such treatments should be considered to assess their place in PD treatment regimens, but this type of patient-centered research is limited.
PURPOSE: Conduct pretest interviews to refine and prepare a survey focusing on patient preferences for various attributes of adjunctive PD medications.
METHOD: The survey was developed based on published data and prescribing information for approved PD treatments, along with input from clinical experts and patient advisors. Semi-structured pretest interviews were conducted with participants who were recruited through a large Parkinson’s advocacy group and met the following criteria: US resident, aged 30−83 years, self-reported physician diagnosis of PD, current treatment with levodopa/carbidopa (LD/CD), and ≥1 “OFF” episode in the past week. Pretest interviews focused on a series of preference questions offering hypothetical adjunctive medications defined by 6 attributes with varying levels (i.e., amount of additional “ON” time, potential risks for dyskinesia and other side effects) and the option of no new treatment, as well as patient’s current medication and “OFF” episode experience. Results from these interviews will be used to refine a final survey.
RESULTS: Of the 15 pretest participants, 9 (60%) were male and mean age (±SD) was 62 (±8) years. Participants reported having 1-5 “OFF” episodes/week, with a majority taking ≥1 adjunctive medication in addition to their LD/CD regimen (3-6 doses/day) and other current medications (5-30 pills/day for PD and other conditions). When presented with a series of choices among two hypothetical adjunctive medications and the option of no new medication, preferences varied by patient. For example, some preferred lower side-effect risks; others preferred a once-daily medication. However, 93% (13/14) chose adding a medication that would offer ~1.5 to 2 hours of additional “ON” time with various potential side effects (versus no medication), despite complicated preexisting medication regimens.
CONCLUSIONS: Findings from these pretest interviews are being used to develop a final survey. This survey will assess patient preferences for attributes of adjunctive PD medications when balancing issues such as efficacy, potential side effects, and preexisting pill burden. This research highlights the importance of patient preferences when choosing PD medications—an important factor that APNs may want to consider when educating patients about treatment options.
