Survey Examines ‘Off Times’ for Parkinson’s Patients, Caregivers

Among Parkinson’s disease (PD) Of patients who participated in a recent survey, 86% reported experiencing daily off episodes (when the effect of the medication wears off and symptoms return) and 56% do not believe their symptoms could improve beyond their current state current.

Many patients were also unaware of the availability of complementary treatment options to address the return of their symptoms.

Those are some of the findings of “Survey evaluation: Impact of leisure time on people with Parkinson’s disease and their carers”, a collaborative effort of the Parkinson and Movement Disorders (PMD) Alliance and Neurocrine Biosciences.

The online survey, conducted by market research and survey firm Ipsos from May 5 to June 10, included 113 US Parkinson’s patients and 127 caregivers. The aim was to determine the levels of awareness among patients and caregivers about “time off” and the medications used to treat it.

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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 areas of the brain that control movement, such as walking and talking.

While such therapies generally control symptoms, they almost always cause a side effect called dyskinesia — involuntary and uncontrolled movements common among Parkinson’s patients undergoing treatment. It is also common for people treated with these therapies to experience downtime, when the treatment does not fully control symptoms.

“At PMD Alliance, we are passionate about connecting directly with the [Parkinson’s disease] community about their experiences, challenges, and strategies for living well after a diagnosis. We hear again and again about the impact of time off, both for people living with the disease and for their loved ones and caregivers,” said Andrea Merriam, interim executive director of the PMD Alliance, in a statement. Press release.

“Good communication between families and health care providers is crucial to recognizing signs of downtime and staying informed about supportive treatment options so that 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 Parkinson’s symptoms. However, most respondents said that “off” periods significantly affect daily activities. Caregivers who responded to the survey said they were more likely to feel anxious, frustrated, and stressed when their loved ones had “shutdown” episodes.

“The results of this survey reinforce that while there are numerous therapeutic options 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 and Movement Disorders Program at the Global Neuroscience Institute. .

“It is our duty as physicians to inform patients of the options available to improve symptoms, and when the options include medications, we need a thoughtful conversation about the potential benefits and risks of incorporating complementary therapy as part of their treatment plan,” Farmer added.

Acceptance of ‘time off’

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

In the survey, 72% mistakenly believe that adding a drug to their main therapy indicates disease progression. Some 49% of respondents reported that they were unsure if their current treatment plan was serving its purpose, and 30% felt uninformed about additional treatment options. Still, 94% of participants said they would ask their doctor about complementary treatments.

“Based on these findings and knowing that most people with [Parkinson’s disease] surveyed say leisure time has a significant impact on their activities, health professionals should discuss with people with Parkinson’s and their caregivers how to best manage symptoms of the disease and the potential benefits and risks of complementary therapy as a possible treatment option,” Merriam said in an e-mail to Parkinson’s News Today.

“Neurocrine Biosciences and the PMD Alliance share an ongoing commitment to foster greater awareness of the realities of living with [Parkinson’s]including how free time affects people with [Parkinson’s] and their caregivers,” said Olga Klepitskaya, medical director of Neurocrine Biosciences.

“Our survey results reveal the significant impact leisure time has on people with [Parkinson’s]. He also revealed the general acceptance of “out” time as an inevitable part of illness and a lack of understanding that there are treatment options available to minimize “out” symptoms. These findings should spark conversations among [healthcare providers]patients and their caregivers about the availability and use of adjuvant treatment options to treat ‘out’ symptoms,” he added in an email to Parkinson’s News Today.

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