National Parkinson Foundation, Its Leading Medical Centers of Excellence and Chapters Nationwide Launch Aware in Care

Release date: 2/21/2012

New campaign to improve hospital care for over 1 million people with Parkinson’s disease; Emerging data shows hospitalization puts Parkinson’s patients at great risk

MIAMI, Feb. 21, 2012—The National Parkinson Foundation (NPF) announced the launch of the Aware in Care campaign today, the first-ever, nationwide initiative to address the growing problem of poor hospital care for over one million people with Parkinson’s disease (PD). Aware in Care features a free kit for PD patients and caregivers to help make hospital stays safer.  NPF, its Centers of Excellence at leading medical institutions, and local chapters urge patients and caregivers to know the steps to take to ensure that people with PD get the best possible care during hospital stays.

“Our research scientists have unearthed important factors which can lower the risk of illness, serious complications and even death of hospitalized Parkinson’s patients,” said Michael S. Okun, MD, NPF’s National Medical Director. “For my patients, and for the up to one million people suffering from Parkinson’s in the U.S., Aware in Care will improve the type of attention and treatment they get in hospitals.”

Emerging data shows that 75% of hospitalized patients with PD are not getting their medication on time and 70% of hospital staff do not know which drugs worsen PD symptoms nor do they know that many common medications are unsafe for people with the disease, despite the fact that hospitalized PD patients are admitted 50% more often than their peers. 1,2,3

“I hear stories that can break your heart,” notes Joyce Oberdorf, NPF’s President and CEO. “The complications many of these patients face when hospitalized are completely preventable. Parkinson’s is a serious, progressive disease, and like diabetes, people with Parkinson’s need medication just to function. Failing to get medication on time or getting the wrong medication can have dire consequences.  The Aware in Care campaign will help patients and healthcare professionals work together for the best possible care.”

The Aware in Care kit is filled with useful information and tools to protect and empower people with PD and their caregivers before, during and after a planned or emergency hospital stay. The kit includes:

  • an action plan to prepare for a hospital visit;
  • a Parkinson’s ID bracelet to wear at all times in case of an emergency;
  • a form to list medications and dosages for important, time-sensitive PD medications;
  • a fact sheet; reminder slips for hospital staff that list vital information about PD care.

“I know from personal experience the anxiety that patients and caregivers face on a daily basis, but particularly during a hospitalization when medications can be interrupted or changed,” said Mrs. Lily Safra, Chairwoman of the Edmond J. Safra Foundation, which has provided lead support for the Aware in Care campaign. “We are very proud to be helping NPF in its vital efforts to improve care for PD patients, and we are confident that these kits will make a real difference to thousands of families.”

Aware in Care is supported by the generous contributions of lead sponsor the Edmond J. Safra Philanthropic Foundation; the Eleanor M. and Herbert D. Katz Family Foundation; Novartis Pharmaceuticals Corporation; UCB; TEVA CNS; Abbott; and people with Parkinson’s and their families. The Aware in Care kits are available for free through local NPF chapters, www.awareincare.org or NPF’s Helpline, 1-800-4PD-INFO (473-4636).

About Parkinson's Disease
Affecting an estimated one million Americans and four to six 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 PD, 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. Since 1982, NPF has funded more than $164 million in care, research and support services. For more information about NPF, visit www.parkinson.org.

About the Edmond J. Safra Philanthropic Foundation
The Edmond J. Safra Foundation supports hundreds of projects related to science and medicine, education, religion, culture and humanitarian relief in over 40 countries. The Foundation has provided significant funding for Parkinson’s disease research and patient care at dozens of hospitals and institutes in places as varied as Natal (Brazil), Toronto, New York, Grenoble, Paris, London, and Jerusalem. For more information, visit www.edmondjsafra.org.  

References

  1. KN Magdalinou, et al. Prescribing medications in Parkinson’s disease (PD) patients during acute admissions to a District General Hospital. Parkinsonism and Related Disorders, 2007.
  2. Kelvin Chou, MD, et al: Hospitalization in Parkinson Disease: A Survey of National Parkinson Foundation Centers. Parkinsonism and Related Disorders, 2011.
  3. Michael J. Aminoff, MD, et al. Management of the Hospitalized Patient with Parkinson ’s Disease: Current State of the Field and Need for Guidelines. Parkinsonism and Related Disorders, 2010.

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