For many with Parkinson’s, symptoms seen as accepted part of diagnosis

Washington, DC, September 14, 2022 – A new Ipsos poll conducted on behalf of the Parkinson & Movement Disorder Alliance (PMD Alliance) and Neurocrine Biosciences, Inc finds that around three in five Parkinson’s Disease patients included in this survey do not believe that their symptoms are manageable. This sense that symptoms are unmanageable is accompanied by a sense of frustration and a desire to limit the length of such symptomatic periods. The poll also finds that among both patients and care partners of those that are currently living with PD, an overwhelming majority are open to learning about new PD treatments and therapies, and many would be open to adding treatments such as adjunctive therapies to their current plans.

Detailed Findings

1. Nearly three in five of these patients do not believe that their symptoms are manageable.

• Fifty-eight percent agree that their symptoms are part of their diagnosis and not manageable. In the same vein, 56% say they don’t think their symptoms can improve beyond their current state.
• An overwhelming majority of these patients wish they could limit the length of their symptomatic periods (94%), report that they lack energy when experiencing PD symptoms (92%) and feel frustrated that they can’t participate in activities they enjoy while experiencing symptoms (87%).
• Parkinson’s care partners (defined as those who care for someone with Parkinson’s disease at least once per week) who responded to this survey also report negative emotions. Ninety percent report that it is hard to get those that they care for to be engaged due to prolonged symptoms, while a similar percentage say that the person they care for feels helpless when experiencing symptoms.
• Despite these struggles, around three in four of the patients in this survey say that their quality of life is good (75%) and that they are satisfied with their current treatment plan (72%), while 54% of these care partners say that those they care for remain positive despite the difficulty of managing their PD symptoms.

2. Among these survey respondents, there is an openness to learning about new PD treatment options or therapies.

• Nearly all of these patients and caregivers are open to learning about new PD treatment options (96% and 98%, respectively), adding an adjunctive therapy to their treatment plans earlier so they can stay on lower doses of levodopa longer (91% and 92%) and trying new medication to enhance their levodopa (89% and 95%).
• Seventy percent of these patients and 66% of these care partners feel informed about treatment options outside of their current plan or PD medications.
• Two in three of these patients and care partners say they are open to considering adding adjunctive therapies to their treatment plans, while around one in three say they would want more information first. In addition, 94% of patients say they would ask their doctor about adjunctive therapies.
  • Along these lines, more than nine in ten respondents say that they would consider talking to their doctor about adjusting their current treatment plan.

3. Both groups of survey respondents (patients and care partners) report lower levels of activity during symptomatic periods.

• Just twenty percent of these patients report being very or moderately active when experiencing OFF time, which is defined as when PD symptoms return between regular doses of medication. Slightly less care partners (11%) report that those they care for are active during OFF time.
• While these patients and care partners are aligned on activity levels during OFF time periods, there is a difference in perception among activity levels when a patient is not experiencing OFF Time. A majority (56%) of these patients say they are very or moderately active when not experiencing OFF time, compared to just 23% of these care partners. This could potentially indicate the level of severity of PD experienced by these care partners (among the person they care for), compared to the patients themselves who completed the survey.
• A strong majority of both these care partners (89%) and patients (79%) agree that activities are more difficult during symptomatic periods.
• At least half of these respondents say that they or those they care for feel frustrated (58%), anxious (55%), or stressed (50%) when experiencing symptoms of OFF time. Patients are more likely than care partners to experience these feelings.
  • Along these lines, two in three say that they or the person they care for are OFF when they are stressed (68%) or tired (64%).

About the Study

These are some of the findings of an Ipsos poll conducted on behalf of the Parkinson & Movement Disorder Alliance (PMD Alliance) and Neurocrine Biosciences, Inc, conducted between May 5 – June 10, 2022. For this survey, a sample of 240 adults age 18+ from the continental U.S., Alaska, and Hawaii was interviewed online in English. To qualify for the survey, respondents either needed to have received a clinical diagnosis of Parkinson’s Disease or be a primary care partner of someone with Parkinson’s. The sample included 113 patients with Parkinson’s Disease, and 127 care partners of people with Parkinson’s Disease.

The sample was randomly drawn from a partner online panel source, M360, which specializes in conducting healthcare research using commercial panel sources. Supplemental interviews were also obtained from the Parkinson & Movement Disorder Alliance email list. If members of their email list consented to be contacted, they were invited to participate in the survey. In total, 100 patient interviews and 125 care partner interviews came from M360, while 13 patient interviews and 2 care partner interviews came from the PMDA list. No post-hoc weights were applied to the data, and findings reflect the opinion of these respondents.

Statistical margins of error are not applicable to online non-probability polls. All sample surveys and polls may be subject to other sources of error, including, but not limited to coverage error and measurement error. Where figures do not sum to 100, this is due to the effects of rounding. The precision of Ipsos online polls is measured using a credibility interval. In this case, the poll has a credibility interval of plus or minus 7.7 percentage points for all respondents. Ipsos calculates a design effect (DEFF) for each study based on the variation of the weights, following the formula of Kish (1965). This study had a credibility interval adjusted for design effect of the following (n=240, DEFF=1.5, adjusted Confidence Interval=+/-9.2 percentage points).

The poll also has a credibility interval of plus or minus 11.3 percentage points for patients with Parkinson’s disease and plus or minus 10.7 percentage points for care partners of people with Parkinson’s Disease.

For more information on this news release, please contact:

Mallory Newall
Vice President, US
Public Affairs
+1 202 374-2613
[email protected]

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