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How Can Communication Regarding Off Periods in Parkinson Disease Be Improved?


Researchers have identifed major barriers and facilitators regarding communication between parties involved along the continuum of care in Parkinson disease, specifically related to off periods of the disease.

While physicians can improve communication with individuals suffering from Parkinson disease (PD) through highly patient-centered care, there remains a need to improve educational tools concerning so-called "off" periods of the disease, according to a study in PLOS One.

Researchers noted that, “Only 36% of persons with Parkinson’s disease and caregivers report satisfaction that their physician ‘listens to each patient and takes the patient’s concerns seriously.’ Multiple studies show that people with Parkinson’s disease were dissatisfied with the amount of information they received about Parkinson’s disease and treatment options.”

As research regarding communication in PD remains scarce, researchers sought to identify communication barriers and facilitators, specifically related to off periods of the disease, between individuals with PD, their caregivers, and physicians. The goal of the study was to distinguish ways to improve communication between all parties involved along the continuum of care.

"Off" periods of PD are times when symptoms treated by medication reappear or worsen, usually near the end of a treatment dose, which often result in a functional disability. Symptoms that reemerge include both motor and nonmotor features. Off periods were selected as the framing context for the study as their emergence is a complex phenomenon that occurs frequently, results in worse health-related quality of life, and influences treatment decisions.

Researchers used convenience sampling to recruit all participants. Individuals with PD were recruited via emails to the Parkinson Disease Foundation Care Partner 2016 Summit mailing list and through postings on Fox Trial Finder, a tool that connects PD patients to research studies, between February 13, 2017, to October 16, 2017. To be included in the study, participants had to have been diagnosed with PD, experienced off periods, been residents of the United States, and had carepartners who were also willing to be interviewed. Respondents with PD answered interview questions by telephone with study investigators.

General neurologists and PD specialists were invited to participate through a campaign that used a mailing list from the Movement Disorders Society. Those who were interested contacted a study investigator by phone or email. They were also recruited by an agency through email. General neurologists were required to evaluate at least 10 patients with PD monthly to meet the study’s inclusion criteria.

Researchers conducted a preparatory systematic review which demonstrated off periods are among the most debilitating events experienced by patients with PD and that they significantly impacted activities of both patients and their caretakers. The review also showed that patients with PD and their caregivers had a limited understanding of off periods and that communication regarding off periods was significantly understudied. Based from the findings of the review, researchers created semi-structured interview guides for patients with PD, caregivers, and physicians that covered topic related to experiences, barriers, and facilitators of communication.

A total of 60 respondents participated in the interviews. Of the total, 20 were individuals with PD, 20 were their caretakers, and 20 were physicians, half which were specialists for PD. Identified communication barriers included patient-level, caregiver-level, and physician level factors.

Interviews were conducted over a telephone call by a single investigator who was a neurologist with movement disorder subspecialty expertise. Patients with PD and their carepartners were interviewed separately. All respondents were compensated for their participation.

“Patients with Parkinson’s disease emphasize that communication is important to medical care and they desire candor, honesty, understanding, and empathy. They value a patient-physician relationship with mutual respect, trust, openness, and adequate time,” researchers said.

Barriers to Communication

  • Patient-Level Factors

According to patients, 1 of the main barriers to communication was difficulty describing off period experiences. Physicians said that the descriptions could be vague at times. Both general neurologists and PD specialists stated that patient recall of symptoms was an additional barrier. Patients with PD said that pride, embarrassment, and unwillingness to admit that changes occurred limited what they said to physicians. Carepartners also noted that patients with PD were often unlikely to report symptoms.

  • Care partner-Level Factors

Both patients with PD and caregivers said that a major barrier to communication was the lack of attendance by caregivers during clinical visits. Physicians reported that barriers arose when care partners themselves showed signs of cognitive impairment and when they observed discrepancies between accounts from patients and their caregivers.

  • Physician-Level Factors

Patients with PD reported feeling frustrated that physicians didn’t understand the extent to which their lives were impacted by off periods. Caretakers said they felt that physicians didn’t investigate the severity of patient off period experiences. They also said they felt unengaged by physicians during clinical visits. Both patients and carepartners said they felt that physicians were distracted by the technology they were using.

Facilitators of Communication

  • Patient- and Care partner-Level Factors

While patient- and caregiver-level factors were rare, all parties involved along the continuum of care agreed that having a carepartner present during clinical visits was important.

  • Physician-Level Factors

Patients with PD said they valued traits like empathy and respect among their physicians. They also said that they appreciated when physicians listened to them and demonstrated interest and curiosity in their experiences. General neurologists remarked upon the significance of taking the time to listen to both patients and their caregivers.

Researchers used a qualitative descriptive approach to analyze the transcripts of the interviews and compare themes among responses of participants.

While the study identified major barrier and facilitators related to off period communication, researchers suggest that further research is required to identify the most effective strategies to improve communication regarding off periods and assess the best approaches for off period education.

“Our results highlight that lack of patient/carepartner education regarding off periods, lack of shared understanding of the concept between patients with Parkinson’s disease and physicians, and limited physician appreciation of the personal impact of off periods are important modifiable communication barriers. These findings suggest an opportunity for Parkinson societies, patient organizations, centers, and physicians to develop off period video and print educational tools for use within clinical encounters, in community settings, and for patient and carepartner self-education,” researchers concluded.


Armstrong MJ, Rastgardani T, Gagliardi AR, Marras C. Barriers and facilitators of communication about off periods in Parkinson’s disease: Qualitative analysis of patient, carepartner, and physician Interviews. PLOS One. 2019;14(4) doi: 10.1371/journal.pone.0215384

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