title: 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.
authors.affiliation: The Cure Parkinson's Trust (CPT), London, UK.
authors.forename: Helen
authors.initials: H
authors.lastname: Matthews
authors.affiliation: The Cure Parkinson's Trust (CPT), London, UK.|Parkinson's Movement (PM), London, UK.
authors.forename: Jon
authors.initials: J
authors.lastname: Stamford
authors.affiliation: Brighton and Sussex University Hospitals NHS Trust, UK.
authors.forename: Romi
authors.initials: R
authors.lastname: Saha
authors.affiliation: King's College Hospital, London, UK.
authors.forename: Anne
authors.initials: A
authors.lastname: Martin
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D017028:Caregivers; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D010300:Parkinson Disease / Q000150:complications* / Q000523:psychology*; D011788:Quality of Life; D011795:Surveys and Questionnaires
keywords: Parkinson’s disease; Quality of life; care partner; wearing-off