Challenges of Improving Patient-Centred Care in Parkinson's Disease.

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.

Rising to the Challenges of Clinical Trial Improvement in Parkinson's Disease.

BACKGROUND: Despite an urgent need for new medications, clinical trials in Parkinson's have a relatively low rate of success. Although many reasons have been proposed for this, the opinions of patients and scientists, the two principal stakeholders, have not been widely canvassed. OBJECTIVE: The objective of the present study was to establish the main barriers to clinical trials success in Parkinson's, as perceived by people with Parkinson's and those engaged in conducting clinical trials in Parkinson's. METHOD: Three hundred and three people (303) with a connection to Parkinson's completed an online four-item questionnaire, directed towards discovering the barriers that interfere with the establishment of effective clinical trials. RESULTS: 87% of respondents were patients and their care partners and 11% were medical professionals involved with clinical research. In the survey, those involved in conducting research cited insufficient financial and administrative support as the biggest obstacles to carrying out effective clinical trials. For responders with Parkinson's, the principal barrier to their participation in medical research was fear of potential adverse consequences and misconceptions regarding the clinical trial system as a whole, issues rooted in a perceived lack of communication of relevant information between the research and patient communities. CONCLUSIONS: Areas for future improvement as highlighted by this survey and debated at the Rallying to the Challenge meeting of people with Parkinson's (PwP) at the Van Andel Research Institute that followed included recommendations in the areas of communication, education, funding, recruitment and compliance.