Abstract
Objective “Off” periods are characterized by the reemergence of motor and nonmotor symptoms in individuals with Parkinson disease (PD) and often negatively affect daily functioning. Individuals' experiences are diverse and may be difficult to articulate; figurative language is often used by patients to describe such experiences. Our objective was to understand how individuals with PD use figurative language to explain off periods and how experts interpret such expressions.
Methods Individuals with self-reported PD participating in the online Fox Insight study were invited to participate in a survey about off periods. Those endorsing off periods were asked to describe their experiences with open-ended free-text responses. Instances where any type of figurative language was used were identified and classified into themes. Three movement disorder neurologists reviewed each phrase and specified what symptoms they felt were likely represented.
Results A total of 109 instances of figurative language phrases were identified across descriptions from 86 patients. Allusions to viscous materials (e.g., mud and cement) and effects of chemicals (e.g., drunkenness) were common (18.35% and 17.43% of phrases, respectively). Most phrases were interpreted by the neurologists as representing motor symptoms, but neurologists agreed on what specific symptom was being referred to for only 42 (38.5%) phrases.
Conclusions To describe off periods, individuals with PD use various forms of figurative language, but this language is not uniformly interpreted and understood by specialists. Given the subjective interpretation of figurative language, exploring what patients are trying to convey when they use such language is important and could improve patient-physician communication.
Footnotes
Funding information and disclosures are provided at the end of the article. Full disclosure form information provided by the authors is available with the full text of this article at Neurology.org/cp.
- Received July 18, 2020.
- Accepted January 6, 2021.
- © 2021 The Author(s). Published by Wolters Kluwer Health, Inc. on behalf of the American Academy of Neurology.
This is an open access article distributed under the terms of the Creative Commons Attribution-NonCommercial-NoDerivatives License 4.0 (CC BY-NC-ND), which permits downloading and sharing the work provided it is properly cited. The work cannot be changed in any way or used commercially without permission from the journal.
The Nerve!: Rapid online correspondence
REQUIREMENTS
If you are uploading a letter concerning an article:
You must have updated your disclosures within six months: http://submit.neurology.org
Your co-authors must send a completed Publishing Agreement Form to Neurology Staff (not necessary for the lead/corresponding author as the form below will suffice) before you upload your comment.
If you are responding to a comment that was written about an article you originally authored:
You (and co-authors) do not need to fill out forms or check disclosures as author forms are still valid
and apply to letter.
Submission specifications:
- Submissions must be < 200 words with < 5 references. Reference 1 must be the article on which you are commenting.
- Submissions should not have more than 5 authors. (Exception: original author replies can include all original authors of the article)
- Submit only on articles published within 6 months of issue date.
- Do not be redundant. Read any comments already posted on the article prior to submission.
- Submitted comments are subject to editing and editor review prior to posting.
