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Patient experiences of receiving a diagnosis of Parkinson's disease

Schrag, A; Modi, S; Hotham, S; Merritt, R; Khan, K; Graham, L; A on behalf of the European Parkinson’s Disease Association, .; (2018) Patient experiences of receiving a diagnosis of Parkinson's disease. Journal of Neurology , 265 (5) pp. 1151-1157. 10.1007/s00415-018-8817-8. Green open access

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Abstract

OBJECTIVE: To report patients' own experiences of receiving a diagnosis of Parkinson's disease (PD) and to identify factors influencing this experience. METHODS: A survey by the European Parkinson's Disease Association in 11 European countries. RESULTS: 1775 patients with an average age of 69.7 years participated of whom 54% were male. Those living in rural areas reported having waited longer to seek medical help (p < 0.05). A possible diagnosis of PD was made at the first appointment in a third of respondents. When the diagnosis was made, only 50% reported that the diagnosis was communicated sensitively. 38% of patients reported having been given enough time to ask questions and discuss concerns, but 29% did not. 98% of participants reported having been given information about PD at the time of diagnosis but 36% did not find the information given helpful. Patient satisfaction with the diagnostic consultation was positively associated with more sensitive delivery of diagnosis, the helpfulness and quantity of the information provided and time to ask questions (all p < 0.001). Where diagnosis was given by a specialist, participants reported greater perceived satisfaction with the diagnostic consultation, greater sensitivity of communicating the diagnosis, time to ask questions, provision and helpfulness of information, and earlier medication prescription (all p < 0.0001). CONCLUSIONS: There is a need to improve how the diagnosis of PD is communicated to patients, the opportunity to ask questions soon after diagnosis, and the amount, timing and quality of life information provided, as this is associated with greater satisfaction with the diagnostic process.

Type: Article
Title: Patient experiences of receiving a diagnosis of Parkinson's disease
Location: Germany
Open access status: An open access version is available from UCL Discovery
DOI: 10.1007/s00415-018-8817-8
Publisher version: http://doi.org/10.1007/s00415-018-8817-8
Language: English
Additional information: © The Author(s) 2018. This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made.
Keywords: Communication, Diagnosis, Experience, Parkinson’s disease, Patient-reported outcome
UCL classification: UCL > Provost and Vice Provost Offices
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > UCL Queen Square Institute of Neurology
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > UCL Queen Square Institute of Neurology > Clinical and Movement Neurosciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > UCL Queen Square Institute of Neurology > Clinical Neuroscience
URI: http://discovery.ucl.ac.uk/id/eprint/10045894
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