Survey Shows Toll of ‘Off Times’ on Patients, Caregivers

More than half don’t think their symptoms can improve

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by Mary Chapman |

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Among Parkinson’s disease (PD) patients who participated in a recent survey, 86% reported experiencing daily “off” episodes — when medication wears off and symptoms return — and 56% don’t think their symptoms can improve beyond their current state.

Many patients also were not aware of the availability of adjunctive treatment options to address the return of their symptoms.

Those are among findings from “Survey Assessment: Impact of OFF Time on People with Parkinson’s Disease and Their Care Partners,” a collaborative effort by the Parkinson & Movement Disorder (PMD) Alliance and Neurocrine Biosciences.

The online survey, conducted by marketing research and polling firm Ipsos from May 5 to June 10, included 113 U.S. Parkinson’s patients and 127 care partners. The goal was to determine awareness levels among patients and caregivers about “off times” and medications used to treat them.

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The standard Parkinson’s treatment is levodopa and its derivatives, which are used to supplant dopamine loss in patients. Dopamine helps transmit signals between brain areas that control movements such as walking and talking.

While such therapies do generally control symptoms, they nearly always lead to a side effect called dyskinesia — involuntary, uncontrolled movements common among Parkinson’s patients undergoing treatment. It’s also common for individuals treated with these therapies to experience “off” time, when the treatment doesn’t fully control symptoms.

“At PMD Alliance, we are passionate about connecting directly with the [Parkinson’s disease] community about their experiences, challenges, and strategies to live well after a diagnosis. We hear again and again about the impact of off time, from both people living with the disease and their loved ones and care partners,” Andrea Merriam, acting CEO, PMD Alliance, said in a press release.

“Good communication between families and healthcare providers is crucial to recognize the signs of off time and stay informed about adjunctive treatment options so intervention can occur early in the treatment plan if needed,” Merriam added.

In the study, 78% of patients reported that their current treatment plan effectively limits their Parkinson’s symptoms. However, a majority of respondents said “off” periods significantly affect everyday activities. Care partners who took the survey said they were most likely to feel anxious, frustrated, and stressed when their loved ones have “off” episodes.

“The results of this survey reinforce that while numerous therapeutic options exist for our patients, these therapies may be underutilized. We need to better explore what ‘effective’ means for each patient, and address what concerns may prevent them from seeking better symptom control,” said Jill Farmer, DO, director of the Parkinson’s Disease & Movement Disorder Program at the Global Neurosciences Institute.

“It is our duty as physicians to make patients aware of available options for symptom improvement, and when options include medication, we need a thoughtful conversation about the potential benefits and risks of incorporating adjunctive therapy as part of their treatment plan,” Farmer added.

Acceptance of ‘off times’

Despite the preponderance of “off” experiences among people with Parkinson’s, and the effect of such periods on caregivers, the survey is said to reveal a general acceptance that these experiences are part of the neurodegenerative disorder. Further, many patients and caregivers may be unaware of adjunctive (supplemental) treatment options that can be used when symptoms return.

In the survey, 72% mistakenly believe that adding a medication to their primary therapy signals disease progression. Some 49% of respondents reported being unsure whether their current treatment plan is serving its purpose, and 30% feel uninformed about additional therapeutic options. Still, 94% of participants said they would ask their physician about adjunctive treatments.

“Based on these findings and knowing that a majority of people with [Parkinson’s disease] taking the survey say that “off” time has a significant impact on their activities, healthcare professionals should have conversations with people with Parkinson’s and their care partners about how to best manage disease symptoms, and the potential benefits and risks of adjunctive therapy as a potential treatment option,” Merriam said in an email to Parkinson’s News Today.

“Neurocrine Biosciences and PMD Alliance share an ongoing commitment to encourage greater awareness about the realities of living with [Parkinson’s], which includes how off time impacts people with [Parkinson’s] and their care partners,” said Olga Klepitskaya, medical director, Neurocrine Biosciences.

“Our survey findings reveal the significant impact “off” time has on people with [Parkinson’s]. It also revealed the general acceptance of “off” time as an unavoidable part of the disease and lack of understanding that there are treatment options available to minimize ‘off’ symptoms. These findings should spark conversations among [healthcare providers], patients and their care partners on the availability and use of adjunctive treatment options for use to address ‘off’ time symptoms,” she added in an email to Parkinson’s News Today.

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