Depression is not detected early enough or treated aggressively enough according to data and recommendations from the National Parkinson Foundation’s Quality Improvement Initiative “Report to the Community”.
USA Today interviewed Dr. Michael Okun, Medical Director for NPF and also the Co-Director of the UF Center for Movement Disorders & Neurorestoration, and Joyce Oberdorf, the president of NPF, about this result.
“Nearly everyone thinks of the disease as a mobility disorder but the No. 1 problem turns out to be depression,” says Joyce Oberdorf, president of the National Parkinson’s Foundation. (USA Today)
The National Parkinson Foundation’s Quality Improvement Initiative (NPF QII) started in 2009 and 20 Centers of Excellence have participated. The University of Florida has gathered data since day one and we continue to add new patients and follow-up annually with patients who participate. Dr. Irene Malaty and Amanda Eilers direct the project here at UF. Dr. Samuel Wu, our biostatistician, has been instrumental in managing the data.
Trying to pinpoint which treatments enable some Parkinson’s patients to thrive while others decline led the foundation to launch the research three years ago. There is no cure.
“Some patients stay active and can live at home rather than go to a nursing home,” says physician Michael Okun, co-director of the Center for Movement Disorders and Neurorestoration at the University of Florida. “There’s a wide disparity of treatments. We wanted to know what treatments were improving quality of life and to set guidelines for good outcomes.” (USA Today)
The NPF QII Report outlines the major findings so far in the study as reported in several papers published using the study data. Most concerning among them is the under-treatment of depression for Parkinson patients, even from expert physicians.
The Report notes:
At least 50 percent of people with Parkinson’s experience depression, and anxiety is also frequently reported. Depression can be disabling, resulting in difficulty with work or engaging in activities like exercise that can help manage symptoms. Yet physicians often have trouble recognizing anxiety and depression, or their roles in hampering efforts to treat Parkinson’s. (NPF QII report, page 12)
The second concern in the report is the continued importance of mobility issues. Bradykinesia (slow movement) in particular stands out as a universal issue for Parkinson patients. Mobility issues can affect every day tasks or prevent you from getting out and doing what you want to do. The report recommends:
The best way to protect your motor function is to use it regularly. A well-designed exercise plan can significantly improve almost everything about your health, including stabilizing your walking, calming tremor, improving mood, and possibly even slowing progression of the disease. Regular exercise is typically associated with a lower care burden, as well. Even as motor symptoms progress, many respond well to medical and surgical treatment. But staying active remains absolutely critical. (NPF QII report, page 12)
These movement issues are linked with the mood component which has been getting more of a spotlight recently. Therefore, honest dialog with your Parkinson physician is recommended:
Your symptoms are connected. Better mobility reduces depression, treating constipation helps with mobility, and so on. Talk to your doctor about whatever is bothering you. (NPF QII report, page 13)
Lastly, the NPF QII report recommends customized care for each patient. The progression of the disease can be different amongst patients or the symptoms they find most troubling can be different.
This is only the beginning and we at UF are excited to be a part of this groundbreaking research. As Joyce Oberdorf told USA Today:
The early findings about effective treatments are “just the tip of the iceberg” . . . “We’re committed to following this for a very long time.”
- Depression is biggest hurdle for Parkinson’s patients, USA Today, 11/28/2012
- Depression Takes a Toll on Parkinson’s Patients, WebMD, 11/28/2012
- National Parkinson Foundation Quality Improvement Initiative Report
- What are the issues facing Parkinson’s disease patients at ten years of disease and beyond?: Data from the NPF-QII study. Hassan A, Wu SS, Schmidt P, Malaty IA, Dai YF, Miyasaki JM, Okun MS.
- Risk Factors For ER And Hospitalization In Parkinson’s Disease: An NPF Quality Improvement Initiative (NPF-QII) Study. Hassan, A., Wu, S., Schmidt, P., Malaty, I.A., Okun, M.S.
- Parkinson Treatment Tips Blog