title: Challenges of Improving Patient-Centred Care in Parkinson's Disease.
abstract: Parkinson's disease is a neurodegenerative condition with a complex pattern of motor and non-motor symptoms. Of several clinical scales used to measure patient experience few are delivered by patients themselves.
  
  
  
  The present study reports the results of an online survey to establish (a) factors that most influence QoL (quality of life) for people with Parkinson's and (b) areas where self-monitoring may help.
  
  
  
  A 27 question online survey (using Survey Monkey) was developed by The Cure Parkinson's Trust, comprising four main sections (demographics, monitoring, symptoms and communication).
  
  
  
  492 patients participated. 97% felt it 'very' or 'moderately' important to understand their own Parkinson's symptoms and recognise patterns in their condition (n = 420). Although, 87% (n = 467) were interested in recording information about their Parkinson's to monitor their well-being, only 49% of respondents were actually doing so. Slowness of movement (82% n = 432) and lack of energy (61% n = 432) were the most reported motor and non-motor symptoms, respectively. These symptoms were also commonly reported to impact QoL (n = 407). In monitoring these symptoms 75% (n = 409) thought it would help improve their understanding of their condition, 64% thought it would improve their wellbeing and ability to cope, 61% thought it would improve their treatment and 59% thought it would improve communication with their healthcare team.
  
  
  
  Collectively, the data suggest that a measurement tool supporting a patient-centred care model would be a combination of objective and accurate measurement of the most bothersome symptoms for patients towards the end goal of improving patients' QoL.
authors.affiliation: Designing a Cure Inc., Toronto, Canada.|Parkinson's Movement, London, UK.
authors.forename: Soania
authors.initials: S
authors.lastname: Mathur
authors.affiliation: Parkinson's Movement, London, UK.|The Cure Parkinson's Trust, London, UK.|University of Sussex, Brighton, UK.
authors.forename: Leah
authors.initials: L
authors.lastname: Mursaleen
authors.affiliation: Parkinson's Movement, London, UK.|The Cure Parkinson's Trust, London, UK.
authors.forename: Jon
authors.initials: J
authors.lastname: Stamford
authors.affiliation: Parkinson's Movement, London, UK.|Parkinson's Action Network, Washington, DC, USA.
authors.forename: Steve
authors.initials: S
authors.lastname: DeWitte
authors.affiliation: Parkinson's Movement, London, UK.|Parkinson's Action Network, Washington, DC, USA.
authors.forename: Israel
authors.initials: I
authors.lastname: Robledo
authors.affiliation: Parkinson's Movement, London, UK.|The Cure Parkinson's Trust, London, UK.
authors.forename: Tom
authors.initials: T
authors.lastname: Isaacs
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D010300:Parkinson Disease / Q000175:diagnosis* / Q000628:therapy*; D000071066:Patient Reported Outcome Measures; D018802:Patient-Centered Care / Q000592:standards*; D011788:Quality of Life
keywords: Parkinson’s disease; measurement; patient reported outcome measures