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Key Findings

Each person’s experience with Parkinson’s disease (PD) is unique. This makes it more difficult to run clinical trials and discover new and better treatments, because figuring out how to measure each person’s PD experience, so critical in clinical trials, has been a challenge for scientists to perfect. In 2008, Parkinson’s Foundation scientists began to wonder if the different care people with PD received impacted their PD experience. 

The Parkinson’s Foundation launched the Parkinson’s Outcomes Project in 2009 and discovered that differences in care did impact patients’ lives dramatically. In conducting this study, we have discovered insights to improve the lives of people with PD today and to speed trials to deliver new and better therapies tomorrow.

As the largest clinical study of Parkinson’s disease ever conducted, the Parkinson’s Outcomes Project spans the patient experience of people with Parkinson’s. With more than 10,000 patients recruited, the study includes a dozen patients with onset before 18 and more than 500 patients who have lived with PD for more than 20 years (80 percent of whom live at home). How do Center of Excellence care teams achieve the best results? For the first time, we are figuring out and tracking the components of the best care and learning about Parkinson’s in the process.

Some recent findings from the study include:

Assessing Deep Brain Stimulation Surgery: Which Best Practices Result in Better Lives?

Can we make deep brain stimulation (DBS) surgery more effective for people with PD? Researchers studied 460 participants before and after undergoing DBS surgery — more than 250 of whom receive care across 10 Parkinson’s Foundation Centers of Excellence.

While DBS patients at most centers experienced a modest improvement in their PD symptoms after surgery, patients at one center experienced superior results over the others. Using this center as a model, the Parkinson’s Foundation will analyze its DBS protocols and use the findings to create a process that identifies patients most likely to benefit from DBS. Once we determine why the surgery or programming is better at this center, we hope to create a new DBS protocol that could be shared across the Center of Excellence network to improve overall DBS surgery outcomes. Creating new protocols like this one can help make life better for people with Parkinson’s.

Presented at the International Parkinson and Movement Disorders Society Congress in 2017.

Higher Risk of Cognitive Impairment in Parkinson’s Disease with Diabetes

Researchers studied 2,000 individuals who were seen at a Center of Excellence. They looked at two groups, participants living with PD and diabetes and those with Parkinson’s only. When comparing the groups, they found that people with PD and diabetes experienced significantly worse cognition than the group without diabetes. While people who live with PD and other chronic conditions — such as arthritis, cancer and other neurological conditions — did not impact cognition, they did negatively impact quality of life, mobility and hospitalization rates. 

This is important because researchers are starting to explore whether there are any linkages between cognitive change in Parkinson’s and cognitive change in diabetes.  Our research confirms that the two diseases combine to result in higher risk of cognitive change. Diabetes drugs are being tested to see if they might have an impact in Parkinson’s. 

Presented at the International Parkinson and Movement Disorders Society Congress in 2017.

Levodopa Induced Dyskinesia in Parkinson’s Disease

Levodopa is the backbone of Parkinson’s treatment. However, people with more advanced Parkinson’s often develop dyskinesia when they take their dose of levodopa. We set out to see if a medication called amantadine is effective at reducing dyskinesia.

The study showed that with expert PD care, amantadine should be considered to treat dyskinesia. Further, the association between reduction in dyskinesia, use of amantadine and treatment of mental health problems are important topics for further studies.

Presented at the World Parkinson’s Congress in 2016.

Antipsychotic Medication and Survival Among People with Parkinson’s

According to clinical study data, those with PD who take antipsychotic medications have a higher mortality rate. The use of dopamine blocking antipsychotic medications has been implicated in the death of people with PD, however there was not enough data on mortality associated with the correct use of antipsychotic medications in expert PD care.

This study analyzed people with PD who take antipsychotic medications versus similar patients not treated with antipsychotics. The study found that those who take antipsychotic medication have an initial elevated risk of mortality, but there is no significant risk once the person takes the medication for more than three years. The study suggested that doctors treating people with PD experiencing psychotic symptoms should refer to an expert clinician and take the proper caution to avoid contraindicated medications during transitions in care.

Presented at the World Parkinson’s Congress in 2016.

Injury Rates for People with PD Predicted by Parkinson’s Severity

This study researched falls among people with PD. The study proved that the rate of injury increases with Parkinson’s severity independently of a person’s age or PD stage. The study showed that those with the highest fall risk are men with rapid rate of progression and a comorbidity (another health issue associated with PD).

Presented at the World Parkinson’s Congress in 2016.

Simpler Prescribing Patterns Associated with a Lower Rate of Falls

In this study, researchers tracked the medications taken by people with PD and their outcomes — all of which received expert care at a Parkinson’s Foundation Center of Excellence. The study not only identified the top 10 medication patterns that prove to be the most efficient for treating PD, but it also identified that the Center of Excellence that reported the lowest falls also treated patients with the simplest PD medication combinations.

The Parkinson’s Foundation is further analyzing this data in hopes of creating a standardized approach to care, more specifically, medication, that can improve the lives of people with PD.

Presented at the World Parkinson’s Congress in 2016.

Further Establishing Young Onset PD Demographics

Researchers used Parkinson’s Outcomes Project data to better define demographic and treatment patterns in the young-onset Parkinson disease (YOPD) population. These demographics include:

  • YOPD patients over time had better cognition than those with typical age of onset for similar disease duration.
  • Unlike some previous reports, the risk of falls and caregiver strain were correlated with duration of PD rather than with age of onset.
  • Given the large number of long-duration YOPD patients, the risk of falls and caregiver strain are both concerns.
  • There is a significantly higher male proportion in the YOPD group. This finding has not been reported in prior studies. 

Presented at the International Parkinson and Movement Disorders Society Congress in 2016.

Regular Exercise Is Associated with Better Quality of Life and Mobility in People With PD

This study examined the associations between exercise and change in quality of life and mobility over two years. The study compared those who exercise and those who did not. Improved mobility and a better quality of life were seen in those who:

  • Consistently exercised
  • Started exercising after their first center visit

Presented at the International Parkinson and Movement Disorders Society Congress in 2016.

2.5 Hours of Weekly Exercise is Associated with Slower Decline in Quality of Life In PD

This study tracked 2,940 people with PD over 2 years and found that those who exercised at least 2.5 hours per week are associated with better health-related quality of life and slower decline.

Presented at the International Parkinson and Movement Disorders Society Congress in 2015.

Identifying Potential Best Practices for Treating Parkinson's: A Mixed Methods Approach

Researchers used Parkinson’s Outcomes Project data to better identify specific care approaches associated with better outcomes across patients who seek expert care at a Center of Excellence. Best practices included:

  • Early referral to physical therapy
  • Encouragement of exercise as part of treatment
  • Availability of a psychiatrist on the team
  • Communication with patients in between visits
  • Focus on early patient and caregiver education

The study concluded that patients at some centers see superior outcomes. Studying these centers, the foundation can test best practices and turn them into evidence-based care recommendations that can help the entire PD health professional community, making life better for people with Parkinson’s.

In 2015, the Parkinson’s Foundation shared these findings at the American Academy of Neurology and presented them at the 2015 International Parkinson and Movement Disorders Society Congress.

Gender Affects Caregiver Support

For the study, the foundation analyzed data on more than 7,000 men and women receiving care across our Center of Excellence network. They looked at whether patients were accompanied by a caregiver for a doctor’s visit and at the relationship between caregiver and patient. Study findings include:

  • Compared with women, men were significantly more likely to have a regular care partner (88.3 percent vs. 80.1 percent), and less likely to have a paid caregiver when they first enrolled in the study (2.2 percent vs. 4.9 percent).
  • Women were 26 percent less likely to have a caregiver accompany them to a regular doctor’s visit. And women were using a paid caregiver at a faster rate than men, which is significant because research suggests that health-related quality of life declines when a family caregiver is replaced by a paid caregiver.

Caregiving is harder on women than men (20.2 vs. 16.9, respectively, as measured on the Multidimensional Caregiving Strain Index), even after adjusting for potential confounders.

 

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