Despite Life Struggles, Many Patients in Survey Open to Better Future

Marisa Wexler, MS avatar

by Marisa Wexler, MS |

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Parkinson's patient survey | Parkinson's News Today | people answering a survey

More than 1 in 3 people with Parkinson’s disease (PD) are dissatisfied with their quality of life, but fully half of these patients are optimistic about what the future holds, according to results of an online survey.

The survey, conducted by Parkinson’s News Today, also showed that most Parkinson’s patients in the U.S. are satisfied with their treatment plan and not considering switching to a different medication. But survey results also highlight a need for better support for people with Parkinson’s, in terms of ensuring a good quality of life.

This survey was conducted in collaboration with BioNews Insights, the research arm of BioNews Services, which publishes this website.

“The results from this survey suggest that there is optimism out there for the future, as most Parkinson’s patients report being satisfied with their treatment plan and are not considering a switch,” Jacob Harney, PhD, research lead at BioNews Insights, said in a statement to Parkinson’s News Today.

“Here at BioNews Insights we are preparing to take a deeper look into the various quality of life components that influence PD patients’ lives so we can continue to educate and better serve the PD community,” Harney added.

Who answered the survey?

The aim of this survey, conducted online from Feb. 4 to April 14, was to gain greater insight into the characteristics of the Parkinson’s community, as well as a better understanding of disease management, treatment plans, medication side effects, insurance, and quality of life.

In total, 607 people completed the survey, most of whom (440, or 72.49%) had Parkinson’s. Roughly a quarter of respondents (24.88%) were friends or family of someone with Parkinson’s, and the rest were medical professionals (1.48%) or researchers studying Parkinson’s (1.15%).

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Subsequent analysis focused only on people with Parkinson’s, whose median age was 57.5. The mean time living with the disease was just over five years, according to 421 responses.

Of the 440 who answered a question about gender, 58.2% were male and 41.3% were female. One participant identified as non-binary/another gender, and one elected not to identify their gender. 

Almost all (95.68%) of the 440 who identified their race/ethnicity were white; 1.59% identified as Latino/Hispanic, with other groups each accounting for less than 1% of respondents.

In terms of education, about half (46.91%) of 437 respondents held a graduate or professional degree. About one-third (31.58%) held a bachelor’s degree, while 12.36% had an associate’s or trade school degree, and 9.15% had a high school diploma or GED.

Out of 341 who reported their income, most were relatively affluent: 38.12% had an income above $100,000, and 20.53% had an income between $75,001 and $100,000. Among others, 19.65% had an income between $50,000 and $75,000, 13.49% of $30,000–$50,000, and 8.21% had an income of less than $30,000. 

Nearly all (94.53%) of the patients had insurance, based on 439 responses. The most common types of insurance — according to 409 responses — were Medicare (56.72%) and private insurance (28.61%).

What care is being given these patients?

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Based on responses from 438 patients, the most common Parkinson’s symptoms were writing changes (70.32%), tremors (67.81%), and fatigue (62.10%), followed by balance problems (57.53%), and slow movement or bradykinesia (55.48%).

The most bothersome symptoms were tremors (21.11%), fatigue (19.72%), difficulties with balance (11.60%), and bradykinesia (8.58%), based on 431 responses.

Nearly all (98.39% of 434) patients were currently seeing a healthcare provider, and 399 out of 435 (91.72%) patients were under treatment.

The most common Parkinson’s treatment was Sinemet (carbidopa-levodopa), which was used by 78.95% of the 399 patients who specified their medication. Other common treatments included Azilect (rasagiline), used by 21.05% of these patients, and Rytary (carbidopa-levodopa) used by 14.04%.

Nearly all, 91.78% of 438 respondents, were also taking medications not related to Parkinson’s.

Out of 435 people, 25 (5.75%) had undergone surgery to treat their disease, with the vast majority specifically undergoing deep brain stimulation

The most common side effects of treatment, based on 371 responses, were constipation (44.20%), fatigue (43.67%), tremors (38.27%), anxiety (33.69%), dry mouth (30.19%), insomnia (29.11%), and dyskinesia or involuntary movements (28.57%).

Among side effects considered the most bothersome, according to 354 responses, were fatigue (16.67%), tremor (12.43%), dyskinesia (11.86%), constipation (10.73%), insomnia (8.19%), and anxiety (7.63%).

About a third of patients (33.95% of 433 respondents) had previously stopped taking another Parkinson’s medication. Common prior medications included Azilect (28.85%), Sinemet (23.08%), Requip (ropinirole, 21.15%), Mirapex (pramipexole dihydrochloride, 20.19%), and Rytary (17.3%), according to responses from 104 patients.

Frequent reasons for stopping these treatments included a lack of effectiveness (36.70%), side effects (33.94%), and the patient’s healthcare team deeming the treatment no longer necessary (10.1%), according to 109 answers. Commonly reported side effects from prior medications included anxiety, constipation, and fatigue.

How do they view their care, life quality?

More than two-thirds of patients — 271 out of 403 — expressed satisfaction with their treatment plan: 52.61% were “somewhat satisfied,” and 14.64% were “extremely satisfied.” Just 12.9% differed, with 10.92% being “somewhat dissatisfied,” and 1.99% “extremely dissatisfied.” Another 19.85% were neutral, being neither satisfied nor dissatisfied.

In line with high satisfaction rates, nearly three-quarters of patients (298 out of 400) said they were not considering switching medications.

Among those thinking of a change, and in hypothetical scenarios where patients would switch medicines, the most common reason given by 295 people was a lack of effectiveness (57.97%), followed by side effects (14.24%) and frequency of administration (10.85%). According to Harney, the emphasis placed on lack of effectiveness in considering a treatment change supports a market for pharmaceutical growth.

Out of 440 patients who addressed their quality of life, over half — 51.59% — reported being satisfied, with 34.32% “somewhat satisfied” and 17.27% “very satisfied.” By contrast, 40.68% were unsatisfied: 31.59% “somewhat unsatisfied,” and 9.09% “very unsatisfied.”

Exactly half of these patients — 220 out of 440 responses — said they were optimistic about their future. More than 1 in 10 (10.7%) was “very optimistic,” while 39.3% were “somewhat optimistic.”

Less than a third (32.27%) were pessimistic about their future — with 27.05% “somewhat pessimistic,” and 5.22% “very pessimistic” — and 17.73% were neither pessimistic nor optimistic.

“Quality of life issues, outside of medications, continue to require deeper investigations as it is lower than might be expected considering the reported level of treatment satisfaction,” Harney said.

Notably, more than two-thirds of patients — 313 out of 435 — reported being likely to participate in a clinical trial, with 38.62% saying they were “somewhat likely” and 33.33% saying “extremely likely.” Among others, most (16.09%) were neither likely nor unlikely to participate in clinical research, while 11.96% said they were unlikely to do so (8.28% “somewhat unlikely,” 3.68% “very unlikely”).

Collectively, the survey results show that many people with Parkinson’s are satisfied with their medical care and optimistic about their future. But a sizable number of Parkinson’s patients continue to be dissatisfied with their life quality, suggesting a need for greater patient support.

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