Parkinson’s Outcomes Project

The Parkinson’s Outcomes Project includes the study that we had been calling the NPF Quality Improvement Initiative (NPF-QII).  Scientists participating in the study still refer to NPF-QII in their papers.

“What’s measured improves.” — Peter Drucker

Long used in technology, engineering, and manufacturing, measurement is the foundation for quality improvement in many consumer and industrial products—from cars to computers. In a similar way, by identifying and measuring the underlying factors and treatment responses in Parkinson’s patients over the entire course of the disease we can find out what works best. 

That’s why, in 2009, NPF launched the first data-driven study of outcomes in Parkinson’s disease: the Parkinson’s Outcomes Project. This initiative, developed in partnership with our Centers of Excellence network, introduces the concept of continuous improvement to Parkinson’s care. The goal is to explore the differences in current clinical practice in order to create and spread models of excellent care for best health outcomes.  This is key to our mission of making sure that every patient receives the best care possible, whether they are seen by a specialist at an NPF Center of Excellence, a general neurologist or their primary care physician.

The Parkinson’s Outcomes Project tracks and monitors the care over time of patients who are seen at participating NPF Centers of Excellence. Because no two people experience Parkinson’s in exactly the same way, the data collected encompasses not only physician assessments, but also patient experience. Putting specialists, surgeons and researchers in communication with one another to share information in this way allows our affiliated centers to pool collective expertise and brain power to move Parkinson’s care forward more rapidly.

In addition to medical management, we are exploring other factors that impact the disease.  For example, recent studies have consistently found that exercise and physical therapy help improve motor symptoms. It’s also been shown that speech therapy helps prevent pneumonia, and occupational therapy helps people live independently and avoid dangerous falls.  That’s why we are now capturing all of this data as well as referrals to allied health professionals.  For the first time, this information will allow us to understand the role that comprehensive care plays in managing Parkinson’s disease as well as to establish proven baselines for Parkinson’s care that will help guide future research. 

Since 2009, more than 7,500 men and women, ranging in age from 25 to 95, have joined the Parkinson’s Outcomes Project’s research study, representing more than 10,000 clinic visits.  They include the largest group of people with young-onset Parkinson’s ever assembled (400 people with onset before 40) and the first to study a large group of people (more than 350) who have lived with Parkinson’s for more than 20 years.  In 2013, NPF will continue to expand the study at Centers of Excellence across the United States and internationally.  

Key Findings:

  • Negative mood and depression have the greatest impact on health status.  At least 40 percent of people with Parkinson’s will experience some form of depression, and as many will experience an anxiety disorder. A clear finding from our study is that, taken together, mood, depression and anxiety, have the greatest effect on quality of life, even more than the motor impairments commonly associated with the disease. Further, our analysis found that QII participants who receive care from clinics with the most active approach to psychological counseling report the lowest rates of depression. 
  • Impaired mobility is the second most influential factor on health status. Mobility problems often result in difficulty walking, balance problems and an inability to perform everyday tasks such as feeding and bathing.  However, regular exercise — more than 2.5 hours per week — is associated with lower degrees of mobility impairment, caregiver burden and impairment in everyday activities. Our analysis found that people who addressed mood and mobility together — using a full complement of therapies including medicine, surgery and exercise — were the most successful in managing their mobility problems and improving quality of life. 
  • Patients at some centers fare better than similar patients at other centers. Our analysis found that NPF-designated centers differed in patient-reported health status for their patients, with the average health status varying by as much as 13 points after adjusting for disease severity. It is not clear why this is, but we suspect it may be due to a combination of two things: doctors at some centers are getting referred patients who are simply doing worse to begin with, and the centers with the best health outcomes are providing a superior level of care that leads to better results.
  • Medication use varies substantially from one neurologist to another. Neurologists rely on their best judgment in managing drug regimens, because in many cases there is little evidence to support one choice of medication over another. Our analysis found that some neurologists opt for more complex and individualized medication strategies, while others prescribe simple treatment plans of one or two medications.
  • Centers refer patients to allied health professionals differently. Referral rates to physical, occupational, speech and other therapists vary by as much as 50 percent for similar patients.  For example, we have found that depression seems to be treated most effectively when patients are referred to a counselor, yet not all centers follow this approach.

View the list of principal investigators and advisors.

The National Parkinson Foundation released early findings from the largest clinical study of Parkinson’s ever conducted, showing that depression is the most important factor influencing the quality of life and health of Parkinson’s patients. The study, known as the Quality Improvement Initiative (QII) is collecting data from more than 7,500 people with Parkinson’s in four countries. QII is one part of the NPF’s broader Parkinson’s Outcomes Project to determine what works best in treatment and care with an aim toward slowing the impact of the disease.

Download the full report.

Read about the report's findings in this article from USA Today: Depression is biggest hurdle for Parkinson's patients.

This report is made possible by generous support from Abbott.

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