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

Date Published: April 18, 2019

Publisher: Public Library of Science

Author(s): Melissa J. Armstrong, Tara Rastgardani, Anna R. Gagliardi, Connie Marras, Rachael A. Lawson.


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.

Partial Text

Numerous studies link patient-physician communication to improved health outcomes [1]. Good communication skills are among the most desired physician qualities described by patients [2]. Showing respect is the aspect of communication most closely tied to physician rating, but patients also want physicians to listen carefully, explain things, provide easy to understand instructions, and spend enough time with them [2]. While over 80% of surveyed adults in the United States (U.S.) indicate that they want their healthcare provider to listen, only 60% say this actually happens and less than half say that their provider asks about their healthcare goals and concerns [3].

Sixty subjects participated (Table 1). All eligible patient and carepartner volunteers were included. Invitations were sent to 999 U.S.-based movement disorders specialists, 20 of whom expressed interest. Thirteen specialists agreed to participate and the first 10 were interviewed. All eligible general neurology volunteers were included. Interviews occurred between March and November 2017. Participating carepartners were mostly spouses (17, 85%; other: son, brother-in-law, close friend). Nine (45%) of participating PwP received care from a general neurologist; the remainder received specialty care. Mean interview duration was 39 minutes for PwP, 33 minutes for carepartners, and 21 minutes for physicians. Themes and select quotes are discussed here; additional quotes are summarized in S1 Appendix.

PwP, carepartners, general neurologists, and movement disorder specialists identified numerous patient-level, carepartner-level, and physician-level barriers and facilitators to communication regarding off periods. In a prior study of advanced PD, PwP, carepartners, and physicians also identified lack of information, poor neurologist support, patient cognitive impairment, lack of caregiver involvement, and PwP-caregiver disagreements as barriers to decision-making [11], consistent with current results. The barriers identified in this study are also consistent with those reported by patients across diseases: patient uniqueness/variability, cognitive/physical impairments, poor physician listening, insufficient information/education, use of medical terminology, lack of time, lack of decision support, and differing expectations between patients and physicians [24]. While many of these barriers are relevant outside PD, the challenging nature of off periods is a unique barrier affecting many aspects of PwP-carepartner-physician communication. PwP described difficulty putting their off symptoms into words. Physicians described challenges correlating symptoms with medication dosing and identifying if there is a treatable fluctuation. Both parties highlighted the lack of a shared vocabulary.