Objective: Identify symptoms and impacts associated with OFF-episodes (OEs).

Background: OFF-episodes are commonly experienced in patients with Parkinson’s disease (PD).  Qualitative research into patients’ experience during OEs is limited.

Method: Concept elicitation interviews were conducted in the US using a semistructured interview guide via telephone (n = 8) and in person (n = 4). Adult patients were recruited by a qualitative research firm, and inclusion was based on patients’ self-report of a clinical diagnosis of PD and OE experience (i.e., current or historical presence of OEs). Field notes and interview transcriptions were used for thematic data analysis.

Results: Table 1 contains participant characteristics.  OEs were consistently described as the reemergence or worsening of symptoms, and 9 participants reported daily OEs. The majority of participants (n = 11) reported experiencing more than 1 type of OE (Table 2); most commonly OEs occurred in relation to levodopa dose timing (n = 11; morning or anytime between doses). Although reported less often (n = 7), unpredictable OEs (a sudden reemergence of symptoms unrelated to dose timing) were described as having a significant impact as they happened suddenly, at any time (“boom”) and in any situation (e.g., driving, at work, in public).  All participants described the far-reaching and negative impact any OE type had on their lives (Table 3). Specifically, participants commonly described modifying their schedules or dosing regimens (n = 7) to address predictable OEs.  Participants (n = 12) reported experiencing physical impacts (i.e. problems with gait, tremors, balance); 7 reported that OEs impact their activities of daily living (i.e. toileting, drinking/eating); hobbies (n = 7; e.g., crafts, gardening), and emotions (n = 6; e.g., stress/fear of hurting oneself or others, embarrassment).

Conclusion: Patients with PD face an often-daily burden of reemergence of their motor and non-motor PD symptoms that are both predictable and unpredictable. The OEs have meaningful impacts on the daily lives of people with PD and represent a need for optimal management.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/patient-insights-into-the-burden-of-off-episodes-in-parkinsons-disease-qualitative-interviews/