Communication About OFF Periods in Parkinson's Disease: A Survey of Physicians, Patients, and Carepartners

Abstract

Background: OFF periods impair quality of life in Parkinson's disease and are often amenable to treatment. Optimal treatment decisions rely on effective communication between physicians, patients and carepartners regarding this highly variable and complex phenomenon. Little is published in the literature about communication about OFF periods. Methods: Informed by interviews with physicians, patients and carepartners we designed questionnaires for each group. We surveyed these parties using an online platform to investigate the frequency, content and ease of communication about OFF periods and barriers and facilitators of communication with physicians. Results: Fifty movement disorder neurologists, 50 general neurologists, 442 patients and 97 carepartners participated. A free-flowing dialogue is the mainstay of communication according to all parties. Motor aspects of OFF periods are discussed more frequently than non-motor aspects (90 vs. <50% according to both general neurologists and movement disorder neurologists). The most common physician-reported barriers to communication are patient cognitive impairment, patient difficulty recognizing OFF periods and poor patient understanding of OFF periods' relationship to medication timing. The barriers most commonly cited as major by patients were that they perceived OFF periods to be part of the disease (i.e., not a clinical aspect that could be improved by a physician), variability of symptoms, and difficulty in describing symptoms. The most commonly described facilitator (by physicians) was the input of a caregiver. Positively viewed but less commonly used facilitators included pre-visit questionnaires or diaries, digital apps and wearable devices to monitor fluctuations. The majority of patients and carepartners identified a free-flowing dialogue with their physicians and having an agenda as helpful facilitators of communication about OFF periods which they already use. The majority of both groups felt that keeping a diary and pre-visit questionnaires were potentially helpful facilitators that were not currently in use. Conclusions: Perceived barriers and facilitators to communication about OFF periods are different between health care providers and receivers of health care. Modifiable barriers and facilitators that could be implemented were identified by both groups. Future research should develop and test strategies based on this input to optimize communication and thus clinical care for this common and debilitating problem.

The Most Bothersome Aspects of Off Periods Reported by Individuals with Parkinson's Disease

“…Although the use of questionnaires to identify and communicate about off symptoms is seen as useful by PD patients, their care partners, and healthcare providers, our results highlight the limitations of using lists as tools in isolation to capture the patient experience in clinical practice. The results are also in keeping with the previous finding that patients with PD value the narrative interview as the most important facilitator of communication with their neurologist related to wearing off, and neurologists rate talking with their patients as the most important facilitator of discussions related to off periods . Our findings highlight the value of gathering unstructured, open‐ended data from individuals with PD.…”

“…The results are also in keeping with the previous finding that patients with PD value the narrative interview as the most important facilitator of communication with their neurologist related to wearing off, and neurologists rate talking with their patients as the most important facilitator of discussions related to off periods. 17 Our findings highlight the value of gathering unstructured, open-ended data from individuals with PD. Such information is useful in determining what bothers patients and what they value most.…”

Impact of disease stage and age at Parkinson’s onset on patients’ primary concerns: Insights for targeted management

“…It is possible that patients do not report their symptoms because of their own lack of knowledge or misunderstanding. Indeed, a recent study identified barriers in communications about OFF periods between healthcare providers and PD patients who often perceived that their OFF periods were part of the disease, so could not be improved by physician’s intervention [ 41 ].…”

Use of Figurative Language by People With Parkinson Disease to Describe “Off” Periods

“…Agreement was more likely for motor symptoms; when a figurative language phrase was interpreted as representing a nonmotor symptom, agreement for which specific symptom was represented was low. This lack of agreement on over half of phrases may reflect a combination of factors, including the heterogeneity intrinsic to PD, 23 the broad range of ways in which patients experience complex PD manifestations and communicate about them, 24 , 25 and the inherently subjective nature of interpreting figurative language. 26 These and other factors may lead to misunderstandings in communication about off periods and, in turn, their suboptimal detection 12 and treatment.…”