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Descriptive symptom terminology used by Parkinson’s patients and caregivers

Authors Mursaleen LR, Stamford JA, Butterfield T, Edwards G, Kustow P, Kustow PA, Griffith S, Dudgeon GMK, Dudgeon MG

Received 28 April 2017

Accepted for publication 28 August 2017

Published 1 November 2017 Volume 2017:7 Pages 71—78

DOI https://doi.org/10.2147/JPRLS.S140697

Checked for plagiarism Yes

Review by Single-blind

Peer reviewers approved by Dr Colin Mak

Peer reviewer comments 2

Editor who approved publication: Dr Peter Hedera


Leah R Mursaleen,1,2 Jon A Stamford,1,2 Tim Butterfield,2 Gaynor Edwards,2,3 Penny Kustow,2 Paul A Kustow,2 Simon Griffith,2 Gilly M K Dudgeon,2 Mike G Dudgeon2

1The Cure Parkinson’s Trust, London UK, 2Parkinson’s Movement, London, UK, 3Spotlight YOPD, Rye, UK

Background: The ability to accurately describe symptoms is a critical facet of patient–physician interaction and represents both a conduit and a barrier to diagnosis and treatment.
Objective: The objective of this study was to discuss the range and breadth of symptom description to provide insights into symptom complexity, patient interest and understanding, as well as possible communication barriers between the patient and the physician.
Patients and methods: Using a synthesis of information from an online survey of 407 people with Parkinson’s and a focus group of 7 people with Parkinson’s and 3 care partners, we examined the descriptors used by patients and carers to describe a range of motor and nonmotor symptoms in Parkinson’s disease.
Results: We found that patient descriptors were more extensive generally for nonmotor than motor symptoms, and that the terminology used to describe neuropsychiatric symptoms was particularly detailed and extensive.
Conclusion: Since many nonmotor symptoms are not visible and require interrogation by physicians and articulation by patients, these are areas of particular vulnerability in the patient–physician communication loop.

Keywords: Parkinson’s disease, symptoms, communication, cognition, symptom language, symptom terminology, symptom descriptors, neuropsychiatric terms

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