Exploring Issues Around Wearing-off and Quality of Life: The OFF-PARK Survey of People with Parkinson's Disease and their Care Partners.

ABSTRACT

BACKGROUND: The negative impact of wearing-off on the quality of life (QoL) of people with Parkinson's (PWPs) is well established. However, most studies have been performed from the clinician's perspective, and the needs of PwPs and care partners have been considered separately. OBJECTIVE: This survey aimed to better understand the impact of wearing-off on both patient and care partner lives and to assess how often they are asked about their QoL in their specialist consultations. METHODS: PwPs and care partners registered with The Cure Parkinson's Trust database were invited to participate in an online survey consisting of 21 questions about wearing-off and QoL. Data was collected for matched pairs (PwP and their care partner). RESULTS: 47 matched pairs completed the survey. The five symptoms most commonly reported as troublesome were tiredness, slowness, reduced dexterity, slowness of movement and slowness in the early morning. Overall, 47% of PwPs indicated that they discuss their QoL at all/most appointments. Whereas most PwPs and their care partners (87% and 74% , respectively) said that they understood what 'wearing-off' means, only 30% of PwPs and 17% of care partners gave a correct answer on further questioning. There was no evidence to support the idea that care partners notice the signs of wearing-off before the PwP. CONCLUSIONS: This matched survey underscores the broad impact that Parkinson's has on daily life on both PwPs and their care partners, and indicates the need for improved communication between PwPs, care partners and their physicians.