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PLoS One. 2019 Apr 18;14(4):e0215384. doi: 10.1371/journal.pone.0215384. eCollection 2019.

Barriers and facilitators of communication about off periods in Parkinson's disease: Qualitative analysis of patient, carepartner, and physician Interviews.

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Department of Neurology, University of Florida College of Medicine, Gainesville, Florida, United States of America.
Morton and Gloria Shulman Movement Disorders Centre and the Edmond J Safra Program in Parkinson's Research, Toronto Western Hospital, Toronto, Ontario, Canada.
Toronto General Hospital Research Institute, University Health Network, Toronto, Ontario, Canada.



Successful patient-physician communication is critical for improving health outcomes, but research regarding optimal communication practices in Parkinson's disease is limited. The objective of the current study was to investigate barriers and facilitators of communication between persons with Parkinson's disease, carepartners, and physicians, specifically in the setting of off periods, with the goal of identifying ways to improve patient-carepartner-physician communication.


We interviewed persons with Parkinson's, carepartners, and physicians (specialists and non-specialists) using a semi-structured questionnaire to identify and describe experiences, barriers, and facilitators relating to communication about off periods in Parkinson's disease. We used a qualitative descriptive approach to analyze interview transcripts and compare themes between participating groups.


Twenty persons with Parkinson's and their carepartners and 20 physicians (10 specialists, 10 non-specialists) participated in interviews. Identified communication barriers included patient-level (e.g. cognitive impairment, reluctance to discuss symptoms), caregiver-level (e.g. caregiver absence), and physician-level (e.g. distraction by technology, lack of appreciation of the burden of off periods) factors. Other barriers included the challenging nature of off periods themselves. Positive physician characteristics such as empathy, respect, and taking time to listen were major facilitators of communication regarding off periods. Persons with Parkinson's, carepartners, and physicians described using various tools (e.g. home diaries, questionnaires, mobile phone videos) to aid communication regarding off periods but participants identified a need for more formal educational materials.


Physicians caring for persons with Parkinson's can improve communication through more patient-centered practice but there is a need for improved educational tools regarding off periods. Further research is needed to identify optimal strategies for communication about off periods and preferred approaches for off period education.

Conflict of interest statement

MJA receives compensation from the American Academy of Neurology for work as an evidence-based medicine methodology consultant and serves on the level of evidence editorial board for Neurology and related publications (uncompensated). She receives research support from ARHQ (K08HS24159), a 1Florida ADRC (AG047266) pilot grant, and as the local PI of a Lewy Body Dementia Association Research Center of Excellence. In the 5 years prior to submission, she also was a local investigator for studies sponsored by the Parkinson Study Group, the Huntington Study Group, the CHDI Foundation, Abbvie, Biotie, and Insightec and she received funding as a sub-investigator or local investigator on the NIH grants U01 AR057967-01, U01NS080818-01A1 and U01NS080840-01A1 (until 2015). She was a consultant on a TBI endpoints development (TED) seed grant 2016-2017. She receives royalties from the publication of the book Parkinson’s Disease: Improving Patient Care and she has received honoraria for presenting at the Movement Disorders Society congress (2013, 2014) and the AAN annual meeting (2014-2017) and participating in Medscape CME. TR and ARG have declared that no competing interests exist. CM has served as a consultant for Acorda Therapeutics. She receives honoraria for serving on the steering committee for the Michael J. Fox Foundation and for teaching from EMD Serono. She receives research support from the Michael J. Fox Foundation, Canadian Institutes of Health Research, Parkinson Foundation (U.S.), NIH, and International Parkinson and Movement Disorders Society. This does not alter our adherence to PLOS ONE policies on sharing data and materials.

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