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.
METHODS: 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).
CONCLUSIONS: Patients with PD face an often-daily burden of reemergence of their motor and nonmotor 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.
