Affiliations: [a] Designing a Cure Inc., Toronto, Canada | [b] Parkinson’s Movement, London, UK
| [c] Parkinson’s Action Network, Washington, DC, USA
| [d] The Cure Parkinson’s Trust, London, UK
University of Sussex, Brighton, UK
Correspondence to: Dr. Jon Stamford, The Cure Parkinson’s Trust, 120 Baker Street, London W1U 6TU, UK. Tel.: +44 20 7487 3892; E-mail: [email protected].
Abstract: Background: 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. Objective: 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. Methods: 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). Results: 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. Conclusion: 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.