Study Finds Patient–Physician Communication Gaps About Parkinson Off Periods

A recently published study used linguistic analysis to investigate communication gaps between patients with Parkinson disease (PD) and physicians about off periods using a database containing dialogues recorded during regular office visits. Not only did the recordings show 4 specific areas that need improvement, they also showed a care gap between what the physicians thought they did and what actually happened.

While physicians believed they provided education about off periods during office visits, the analyzed conversations showed that any education was incomplete, lacking detail, and often absent. These gaps may prevent patients with PD from receiving the necessary care for treatment of off periods, the researchers said.

Dopaminergic drugs are the mainstay in managing PD symptoms, but over time, many patients begin to experience motor fluctuations as the disease progresses, with alternating periods when the symptoms are controlled (called on periods) or not controlled (called off periods). As the disease progresses, the intervals between the on/off periods get shorter, and medication must be adjusted.

The researchers, writing in Research and Reviews in Parkinsonism, said that identification of off periods is impeded by lack of patient education, awareness, patient—physician miscommunication, and limited time for assessment. The 4 areas demonstrating communication gaps were:

• Differences in language
• Patient knowledge about off periods
• Differences in approach to describing off periods
• Attitude toward management of off periods.

The first part of this 2-part study involved linguistic analysis of pre-recorded dialogues from an existing database containing over 900 dialogues recorded during regular office visits between patients with PD, caregivers, and physicians. The recordings were made with the participants’ written consent. Of these 900 recordings (165 in the prior 12 months), 250 dialogues containing language specific to “wearing off” or off periods were identified. To further winnow down the dialogues, 30 of the most common terms that physicians and patients use to refer to off periods were selected. Examples of such terms include motor fluctuations, on/off phenomenon, off episodes, freezing, or low state.

Researchers then analyzed 30 discussions that represented a spectrum of disease severity, including substantial discussion of motor fluctuations, frequency, or management of off periods. Dialogues were selected if the patient had been diagnosed with PD for at least 2 years, were taking levodopa, and did not have cognitive impairment, and if the treating physician was a general neurologist or movement disorder specialist.

Six to 12 months after the initial recorded office visits, follow-up telephone interviews were conducted with physicians, patients, and caregivers. These follow-up interviews focused on perceptions of “typical” off period discussions.

Physicians were asked about the main challenges in managing a specific patient’s PD as well as general attitudinal questions. Patients were asked about how well they are able to understand their physician’s questions and instructions, how they feel during off periods, and what they wish other people understood about living with PD.

Speaking different languages

Physicians, patients, and caregivers used different language to discuss off periods. Patients reported they lack a term for off periods and used anecdotal words and expressions such as “leak,” or “having a weird feeling.” Only 3 of 29 patients, and none of the caregivers, used the term “wearing off.” Physicians, on the other hand, used language that focused on the timing and pattern of off symptoms, such as “ time,” “days,” “morning,” “commonly,” “frequently,” and “sometimes.” They also used motion metaphors to describe motor fluctuations such as: “up/down,” “freeze/frozen,” “hold,” “stop/go,” and “on/off.”

Different understandings about patient knowledge about off periods

There was a disconnect between what physicians thought they were telling patients and what patients reported understanding. Although most physicians said they provide clear education to patients about off periods, patients did not report this; importantly, only 2 out of 30 recorded dialogues actually included any conversation about why off periods occur and how to manage them.

Differences in describing off periods

Patients described their symptoms in terms of activities they could not do or had difficulty with, whereas physicians used terms like “stiffness,” “weakness,” “tremor,” and “falling,” and concentrated only on whether off periods occurred; they did not ask follow-up questions about the intensity or impact of the off periods on their patients’ activities. In addition, most patients described nonmotor, cognitive, or emotional symptoms, such as “not remembering how to do anything complicated,” “brain fog," confusion, anxiety, and drooling, but fewer than half of the interviewed physicians mentioned nonmotor symptoms at all in the dialogues.

Attitude toward management of off periods

Patients thought that off periods were inevitable or did not realize the importance of communicating off periods, according to doctors. “[Patients] don’t want to think that the disease is getting the better of them, so they don’t mention the problems they’re having,” one physician told the researchers. The recordings showed that physicians might discuss that a change in medication might help with off periods, but rarely explained why a treatment change might help, or why off periods occur.

Although most physicians said they ask patients about their symptoms and relate them to the dosing schedule, the recordings indicated that these exchanges were often incomplete.

For example, many physicians asked patients about both symptoms and dosing times, but did not link the 2 factors in conversation. In addition, poor patient cognition and impaired speaking ability due to the disease also hindered communication. The researchers noted the role of caregivers, who can help by acting as interpreters between patients and physicians, by reporting symptoms that patients may be unable to recognize or report, and advocating for the patient.

The study, which was funded by Acorda Therapuetics, had a few limitations. While it was a small, self-selected sample population, the researchers said they have no reason to believe that the communication skills of this group are worse than average. Also, the follow-up interviews were completed 6 to 12 months after the office visit, and participants’ recall likely relied heavily on reading the transcripts rather than their memory of the visit.

Reference

Levit AV, Zebendon C, Walter L, O’Donnell P, Marras C. Communication gaps about off periods between physicians and patients with Parkinson’s disease: a patient—physician dialogue analysis [published online April 30, 2019]. Research and Reviews in Parkinsonism. doi: 10.2147/JPRLS.S188923.