First Data from Largest, Ongoing Study of People with Parkinson's Disease Reveals Depression Has Biggest Impact on Health Status

Release date: 11/28/2012

Read news coverage about the National Parkinson Foundation's study in USA Today, WebMD and iVillage.

National Parkinson Foundation Recommends Annual Screening for Depression

MIAMI, Nov. 28, 2012 — The National Parkinson Foundation (NPF) today released early findings from the largest clinical study of Parkinson's disease ever conducted, showing that depression is the most important factor influencing the health status of Parkinson's patients. 

The study is part of the Parkinson's Outcomes Project, a longitudinal look at which treatments produce the best health outcomes. Started in 2009, the study represents data from more than 5,500 people with Parkinson's disease in four countries.

Parkinson's disease, a chronic brain disease, impairs many aspects of movement causing tremors, muscle rigidity and slowed movement. Yet, according to the study, the impact of depression on health status is almost twice that of the motor impairments universally associated with Parkinson's.  About half of patients with Parkinson's are believed to experience some form of depression during the course of the disease, and some research suggests that depression and anxiety may be more common in Parkinson's than in patients with other chronic diseases. However, depression can be particularly difficult to diagnose in people with Parkinson's because many common disease symptoms, such as fatigue and masked facial expressions, may hide mood changes.  Studies show that most people with Parkinson's go unrecognized or undertreated for depression.

Based on the findings in this study, and the fact that addressing depression can positively impact levels of disability, relapse and health status, NPF recommends:

  • Physicians screen patients for depression at least once a year. 
  • Patients discuss any change in mood with a healthcare professional, and make sure that their Parkinson's doctor is aware. 
  • Patients bring to doctor's appointments a family member who is encouraged to share any changes noted in the patient's mood.

The Parkinson's Outcomes Project seeks to identify factors that can slow the course of the disease and help people live longer, better, and more active lives. NPF hopes the research will prompt a national dialogue around specific measures that promise to improve patient care. All participants in the study have received care at specialty clinics designated by NPF as Centers of Excellence.

"Routine aspects of care are rarely studied, so this research is invaluable in proving that there are vast disparities in Parkinson's treatment and showing which aspects of care really work," said Matthew Stern, M.D., of the University of Pennsylvania, who is also President-Elect of the Movement Disorder Society. "For example, this latest data demonstrates how important it is to quality care to refer patients for multi-faceted treatment of depression."

While no two people experience Parkinson's disease in quite the same way, this study enables NPF to see the interplay of factors that produce different results in different people.

"If you have Parkinson's disease, there is almost certainly someone like you participating in this study," said Joyce Oberdorf, President and CEO of NPF. "The fact is, people with a similar severity of Parkinson's could be receiving different care with significantly different outcomes and our goal is to determine what makes that difference."

Researching Differences in Patient Care

Over time, NPF's goal is to identify which strategies produce the best results and how specific centers measure up. Future research will examine exactly which tactics are achieving the best outcomes for patients over the long term and data from the study will be reported back to the Parkinson's community periodically.

"We believe that the work we are doing will guide a revolution in Parkinson’s care, not just enabling better care in the clinic, but empowering experts to set standards to guide care in the community," said Peter Schmidt, PhD, CIO and Vice President of Programs for NPF, and co-chair of  the study. "Across medicine, best outcomes are achieved when the health team has a clear and accurate picture of how patients are feeling and how they are limited because of their health.  This study is a pioneering example of this approach."

About The Parkinson's Outcomes Project: What Works Best?

The study is being conducted at 20 academic medical centers around the world, with 85% of the patients seen in the United States and 15% internationally.  Unlike other studies, patients are included in the study independent of disease status or other health problems, aiming to get a balanced perspective on the impact of Parkinson's in real-world patients.  Each participant is given an annual evaluation, recording both the patient's and caregiver's perspective, as well as the doctor's assessment for analysis.

The Parkinson's Outcomes Project was created to help researchers identify which treatment and care strategies have the greatest impact on lessening the symptoms of Parkinson's by studying the differences in care provided by leading experts. At the project's core is the Quality Improvement Initiative, a comprehensive database of information on more than 5,500 patients, who have been evaluated in the clinic by expert neurologists. In future years, the project will grow to follow tens of thousands of patients worldwide. The project will:

  • Fund comparative research to determine best treatments and why some people respond better to some therapies than others; 
  • Create transparency about which strategies produce the best results and how specific centers measure up;
  • Allow individuals to compare their health and treatments to that of others; and 
  • Inform education and outreach efforts for both families and professionals.

The project was funded by thousands of families affected by Parkinson's disease and generous support from the following foundations and corporations: Abbott, Braman Family Foundation, Inc., Major League Baseball Players Trust, Parkinson Association of Minnesota, Parkinson's Unity Walk, NPF South Palm Beach County Chapter, St. Jude Medical, Teva Neuroscience, Inc., The Greenberg-May Foundation, Inc., The Kinetics Foundation, The Leir Charitable Foundation, and The Thompkins-Broll Family Foundation.

About Parkinson's Disease
Affecting an estimated 1 million Americans and from 4 million to 6 million worldwide, Parkinson's disease is the second most common neurodegenerative disease after Alzheimer's and is the 14th leading cause of death in the United States. It is associated with a progressive loss of motor control (e.g., shaking or tremor at rest and lack of facial expression) as well as non-motor symptoms (e.g., depression and anxiety). There is no cure for Parkinson's, and 50,000 to 60,000 new cases are diagnosed each year in the United States alone.

About The National Parkinson Foundation
Founded in 1957, the National Parkinson Foundation's mission is to improve the quality of care for people with Parkinson's disease through research, education and outreach. NPF has funded more than $164 million in care, research and support services. For more information about NPF, visit www.parkinson.org or call 1-800-4PD-INFO (473-4636).

To download the "Parkinson's Outcomes Project: Report to the Community" visit: www.parkinson.org/outcomes.

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