Challenges of Improving Patient-Centred Care in Parkinson’s Disease

Abstract

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.

Descriptive symptom terminology used by Parkinson’s patients and caregivers

“…We took as our starting point the published categorization of symptoms by Mathur et al 11 This categorization was conducted by a physician with PD and attempted to synthesize patient descriptions of clinical symptoms. This amounted to 13 categories to cover all patient descriptions.…”

“…11 This question, answered by 407 people with PD, generated symptom descriptors which mapped to the following categories as described by Mathur et al:…”

“…The survey data used were part of a larger survey of 492 people with PD, collected between 13 July and 9 September 2015, parts of which have been reported elsewhere. 11 The focus group took place on the 12 August 2016 at The Cure Parkinson's Trust, a UK-based research charity. Completion of the survey and/or participation in the focus group was deemed to be consent from the participants.…”

“…3 Irrespective of the source, these components define the PD patient experience. Although these are not the only factors explaining perceived quality of life, 4 there has been much interest over the last several years on the relevance of motor and nonmotor symptoms as determinants of quality of life in people with PD, [4][5][6][7][8][9][10][11] with nonmotor symptoms having collectively a greater impact than motor symptoms on the decline of health-related quality of life. 5,[8][9][10] Common nonmotor concerns among patients include sleep disturbance, 4,7,9 fatigue 4,5,11 and neuropsychiatric symptoms such as depression,…”

“…[4][5][6][7]9,11 Nonetheless, there remains a lack of clarity on the use of individual nonmotor descriptors.…”