Dr. James Beck 00:00:01
People with Parkinson's are hospitalized one and a half times more often than their peers without Parkinson's. These visits often bring complications, such as not receiving medications on time.
I'm Dr. James Beck, Chief Scientific Officer of the Parkinson Foundation. Today, I'm going to discuss the Parkinson's Outcomes Project and what we've learned from this groundbreaking study. Launched in 2009, the Parkinson's Outcomes Project is a Parkinson's disease study that captures the experiences of people with Parkinson's and their care partners over time. The study analyzes topics such as medication, treatment, exercise and lifestyle.
The goal of the Parkinson's Outcomes Project is to improve health outcomes and quality of life for people with Parkinson's and their care partners. By collecting individual experiences and looking at them together, we can identify new and better ways to provide care and manage Parkinson's.
The study follows more than 13,000 people with Parkinson's and how they've lived with Parkinson's for more than a decade. This is the largest clinical registry tracking the experiences of 8,300 men and nearly 5,000 women living with Parkinson's. The study collects data from 27 Parkinson's Foundation Centers of Excellence located around the world. These are medical centers that provide the latest Parkinson's treatments to their patients.
Dr. James Beck 00:01:28
By asking people with Parkinson's and care partners about their experiences and tracking the effectiveness of these treatments, the Parkinson's Outcomes Project identified several clinical practices that have already led to a better overall quality of life.
The first areas of focus are exercise and physical therapy. The study found that increasing physical activity to at least two and a half hours a week can slow the decline in quality of life and help people with Parkinson's live fuller lives. At the same time, referrals to a physical therapist during the early stages of the disease can help prevent hospitalization and falls.
The study has revealed trends in mental health. Depression and anxiety are the top mental health factors impacting the overall health of people with Parkinson's. However, these symptoms are often underdiagnosed and undertreated.
Caregiving is also an area of focus. The study found that the cost of caregiving increases 180% from the early to advanced stages of Parkinson's, with female care partners predominantly carrying the weight of care.
Another landmark finding regards hospital care. People with Parkinson's are hospitalized one and a half times more often than their peers without Parkinson's. These visits often bring complications, such as not receiving medications on time, and that can prolong the length of the stay. This finding gave way to the Foundation's creation of the Aware in Care Hospitalization Kit, which helps ensure that every person with Parkinson's is well prepared for hospital visits.
Dr. James Beck 00:02:53
The impact of the Parkinson's Outcomes Project will continue to direct the work of the Parkinson Foundation and our Centers of Excellence globally. One of the Foundation's priorities moving forward is to gain a greater understanding of people with Parkinson's who have been traditionally underrepresented in clinical research. This includes incorporating broader ethnic and racial diversity into our research, as well as analyzing early- and late-stage disease progression.
The Foundation also offers genetic testing to those involved in the Parkinson's Outcomes Project through our PD GENEration study. Genetic testing can help people learn more about their own disease and accelerate the development of improved treatments and care for all people with Parkinson's.
To find out more about how the Parkinson's Outcomes Project furthers research and changes lives, visit Parkinson.org/outcomes.
