Survey examines ‘times off’ for Parkinson’s patients, caregivers |…

Among patients with Parkinson’s disease (PD) who took part in a recent survey, 86% reported daily “off” episodes – when medication wears off and symptoms return – and 56% don’t think their symptoms are improving improve beyond their current condition.

Many patients were also unaware of the availability of add-on treatment options to address their symptom recurrence.

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

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

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

While such therapies generally control symptoms, they almost always result in a side effect called dyskinesia — involuntary, uncontrolled movements common in Parkinson’s patients undergoing treatment. It’s also common for people treated with these therapies to experience an “off” period when treatment doesn’t fully control symptoms.

“At the 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 keep hearing about the impact of free time, both from people living with the disease and from their loved ones and caregivers,” said Andrea Merriam, acting CEO of PMD Alliance, in a press release.

“Good communication between families and healthcare providers is critical to recognizing the signs of downtime and staying informed about complementary treatment options so that intervention early in the treatment plan can be made if needed,” Merriam added.

In the study, 78% of patients reported that their current treatment plan was effective in controlling their Parkinson’s symptoms. However, a majority of respondents indicated that “off” times significantly interfere with everyday activities. Care partners who took part in the survey indicated that they are most likely to feel anxious, frustrated and stressed when their loved ones are having “off” episodes.

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

“It is our duty as physicians to make patients aware of available options to improve symptoms, and when options include medication, we need a thoughtful conversation about the potential benefits and risks of including concomitant therapy as part of their treatment plan,” added farmers added.

Acceptance of “time out”

Despite the predominance of “off” experiences in people with Parkinson’s and the impact of such periods on caregivers, the survey aims to show a general acceptance that these experiences are part of the neurodegenerative disease. In addition, many patients and caregivers may not be aware of complementary (complementary) treatment options that can be used if symptoms return.

In the survey, 72% incorrectly believe that adding a drug to their first-line therapy signals disease progression. About 49% of respondents said they were unsure if their current treatment plan was working, and 30% felt uninformed about additional treatment options. Still, 94% of participants said they would ask their doctor about additional treatments.

“Based on these findings and the knowledge that a majority of people with [Parkinson’s disease] If they take the survey and say that “free” time has a significant impact on their activities, healthcare professionals should have conversations with people with Parkinson’s and their caregivers about how best to manage symptoms of the disease and the potential benefits and Risks of a possible adjunctive therapy treatment option,” said Merriam in an email to Parkinson’s News Today.

“Neurocrine Biosciences and the PMD Alliance share an ongoing commitment to fostering greater awareness of the realities of life [Parkinson’s]including the impact of leisure time on people with [Parkinson’s] and their care partners,” said Olga Klepitskaya, medical director of Neurocrine Biosciences.

“Our survey results show the significant impact of leisure time on people with disabilities [Parkinson’s]. It also revealed a general acceptance of periods “off” as an unavoidable part of the disease and a lack of understanding that there are treatment options to minimize “off” symptoms. These results should stimulate conversations between them [healthcare providers]Patients and their care partners about the availability and use of add-on treatment options to manage “off-time” symptoms,” she added in an email Parkinson’s News Today.