Among the critical discoveries so far, the research has shown that regular visits to neurologists, more exercise, and more attention to mental health could help improve patients’ wellbeing.
The Parkinson’s Outcomes Project is evaluating a broad range of factors associated with the disease, including medications, treatments, movement symptoms, cognition, anxiety and depression, and the disorder’s burden on caregivers.
Launched in 2009, the project has become a comprehensive platform for studying the lives of Parkinson’s patients. And it has led to the formation of a consortium of 29 experts in five countries.
The study includes over 100 people who have lived with Parkinson’s for more than 30 years and 83 who learned about their diagnosis before they were 30 years old. Its records include 25,000 visits to doctors and information from almost 9,000 caregivers.
Key conclusions drawn from the study include:
Regular visits to neurologists should be a priority for patients and caregivers because it could save thousands of lives a year.
Recent research has listed regular visits to a neurologist as an important step in Parkinson’s management. However, in a 2011 study, only 58 percent of 138,000 Parkinson’s-related difficulties led to neurologist care. Race was a significant demographic predictor of neurologist treatment, with non-whites being less likely to receive care.
Doctors should give patients’ physical activity more attention because studies have shown that increasing exercise and movement to at least 2 1/2 hours a week can slow the decline in patients’ quality of life.
Researchers have found that, in Parkinson’s, it’s not the type of exercise a patient engages in, but the frequency of the workout that’s important. Physical therapists recommend exercises whose goals include improving balance and coordination, flexibility, endurance, and strength.
Patient’s mental health should be a priority because researchers have found that depression and anxiety are leading factors in patients’ overall health.
Depression is one of the most common non-movement symptoms of the disease, with up to 60 percent of patients affected at one time or another.
Finally, doctors should do a better job of addressing gender differences between patients. A key reason is that many men can rely on wives and other family members for daily support and doctor visits. Women are less likely to have family caregiver support and be more frequent users of formal, paid caregiver services.
“We have obtained a wealth of information in what now represents the broadest and most inclusive patient population ever assembled in a clinical study of Parkinson’s,” Peter Schmidt, the senior vice president of the Parkinson’s Foundation, said in a press release. He has been directing the study.
“This project is truly innovative in that it not only follows thousands of patients over time, but that it studies everyone with Parkinson’s, from the newly diagnosed to people who have lived with the disease for 30 years or more,” added Thomas Davis, the study’s co-chair.
Researchers have been using the Parkinson’s Foundation’s Centers of Excellence network of 42 medical centers to enroll patients in the study.
In addition, “we are studying the quality of Parkinson’s care delivered at our Centers of Excellence to help patients who aren’t being seen at one,” said Fernando Cubillos, who oversees the study’s operations. “Our goal is to help identify the best care and disseminate that information widely.”