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

Abstract

Background 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. Method 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. Results 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. Conclusions 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.