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Patient experiences of receiving a diagnosis of Parkinsons's disease

Schrag, A., Modi, S., Hotham, S., Merritt, R., Khan, K., Graham, L. (2018) Patient experiences of receiving a diagnosis of Parkinsons's disease. Journal of Neurology, 265 . pp. 1151-1157. ISSN 0340-5354. E-ISSN 1432-1459. (doi:10.1007/s00415-018-8817-8) (KAR id:66516)

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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.

Item Type: Article
DOI/Identification number: 10.1007/s00415-018-8817-8
Uncontrolled keywords: Parkinson's disease, Patient-reported outcome, Diagnosis, Communication, Experience
Subjects: H Social Sciences > HM Sociology
Divisions: Divisions > Division for the Study of Law, Society and Social Justice > School of Social Policy, Sociology and Social Research > Centre for Health Services Studies
Depositing User: Paula Loader
Date Deposited: 29 Mar 2018 10:37 UTC
Last Modified: 29 Oct 2021 14:37 UTC
Resource URI: (The current URI for this page, for reference purposes)
Hotham, S.:
Merritt, R.:
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