Poll: Majority of patients with Parkinson’s believe symptoms are unmanageable

Results of a recently released poll revealed that roughly 60% of patients with Parkinson’s disease do not believe their symptoms are manageable and cannot be improved beyond their current state.

According to a press release from Ipsos, of 240 survey respondents — both patients with PD and caregivers in the U.S. — only 20% of patients reported being very or moderately active when experiencing “off” time, which was defined as when PD symptoms return between regular doses of medication. While just 11% of caregivers reported that those they care for are active during “off” time.

The survey was conducted on behalf of the Parkinson & Movement Disorder Alliance and Neurocrine Biosciences.

Nearly all patients (96%) and caregivers (98%) surveyed said they were open to learning about new PD treatment options, including adding adjunctive therapies to their treatment plans earlier so they can stay on lower doses of levodopa longer (91% and 92%, respectively) and trying new medication to enhance levodopa (89% and 95%). Further, more than 90% of patients said they would consider talking to their doctor about adjusting their current treatment plan, the release stated.

“The survey findings suggest that despite a majority of people with PD and their care partners being significantly impacted by ‘off’ time, there is a general acceptance that the emergence of ‘off’ time is part of the disease, and they may not be aware of the availability and use of adjunctive treatment options for use to address return of PD symptoms,” Olga Klepitskaya, MD, medical director at Neurocrine Biosciences, told Healio.

The survey also revealed that 94% of these patients wish they could limit the length of their symptomatic periods, 92% reported a lack of energy when experiencing PD symptoms and 87% feel frustrated they are unable to participate in activities while experiencing symptoms. Despite these struggles, 75% of the patients surveyed said their quality of life is good, and 72% are satisfied with their current treatment plan. Conversely, just 54% of care partners reported that the patients they care for remain positive despite the difficulty of managing PD symptoms.