Parkinson’s patients, families and clinicians have been frustrated with the lack of successful new treatments for Parkinson’s disease. Over the last 15 years, clinical trials of new drugs have largely failed to result in options that have led to improvement in the quality of life of those living with Parkinson’s disease.
The National Parkinson Foundation’s Parkinson’s Outcomes Project (POP) is taking a different approach to making a real difference for the PD community in the near future. This is largest longitudinal study of PD patients using objective outcomes to support changes in management of PD patients. By prospectively following over 8,000 patients at many of NPF Centers of Excellence, the study is evaluating patients using annual assessments to determine the best outcomes using objective longitudinal data.
The POP is using a patient-reported quality of life scale as an important measurement of how patients are doing. There are a number of other measurements that are performed to assess mobility, cognition and to determine if non-medication interventions such as speech therapy, occupational therapy, physiotherapy, mental health services and exercise have an impact on outcomes.
The concept of having outcomes research employing Center of Excellence networks for rare conditions is not new. The Cystic Fibrosis Foundation used this approach to determine if there were better outcomes at different sites in their network. Although all sites had access to similar therapies, some sites stood out using different approaches. By evaluating the outcomes at different centers and then examining their treatment processes, there were significant improvements in survival in cystic fibrosis patients even without therapeutic breakthroughs.
The NPF POP study has already released important results:
- In a multiple regression, cross sectional analysis of patients, it was determined that depression is a major determinant of quality of life for PD patients. The study’s finding led to NPF releasing recommendations for annual depression screening.
- There is also a group of patients who have lived well with Parkinson’s for an unusually long amount of time. Analysis of these patients -- who have over 20 years of PD -- has given a better understanding of the characteristics of these patients and hopefully will lead to a better understanding of why they have done so well.
- One of the most interesting results to date has identified that if patients exercise more than 2.5 hours in a week, their PD symptoms progress less rapidly. This is perhaps the first study to confirm what neurologists have been suggesting to patients for many years – exercise is good for them and will improve their prognosis. There have been animal studies that have shown if rats, mice and primates with an animal model of PD exercise, there are objective improvements in brain chemistry and function.
I have changed aspects of how I care for patients because of what I’ve learned. Much of science is about exploring the unknown, and this is important, but the Parkinson’s Outcomes Project is about exploring what different centers know and figuring out how we can take the components of the very best care – some that I figured out in my own practice and many others from across our network – and inform a model of care that will give today’s patients the best care that they can get. As we learned from our study of patients with over 20 years of PD, the very best care, incorporating the best things we neurologists do in our clinics and the best things that patients do for themselves, can yield a great life in spite of the disease. This is a challenging study to get right, but it is worth it for the impact on my patients—and for the patients I can’t reach. I hope that you will support NPF in its mission to deliver the best care to people with Parkinson’s today! I do.
Dr. Guttman is the Director of the Centre for Movement Disorders in Markham, Ontario which is one of the largest Parkinson’s practices in the country with over 1500 Parkinson’s patients. The Centre for Movement Disorders is a National Parkinson Foundation Centre of Excellence based on its support of clinical and research efforts in Parkinson’s disease. Dr. Guttman is involved with Parkinson Society Canada by being a member of the Research Policy Committee and has previously been a member of the Scientific Advisory Board and the National Board. He is also a member of the National Parkinson Foundation Scientific Advisory Board. In addition to performing research in Parkinson’s disease and related disorders, he reviews grants for many funding agencies and reviews scientific publications for medical journals.