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New Survey Uncovers Critical Need for Education on Key Issues in Parkinson's Disease
Unique resources and tools needed to fill unmet needs of neurologists, people with Parkinson's disease and caregivers
New York, NY - Oct 07 2008
New findings from the first nationwide survey in a decade to explore the dynamics between neurologists, people with Parkinson's disease and their caregivers, revealed a need for increased education on key issues in the management of Parkinson's disease. Significant insights highlight a great need for the development of resources that can improve disease management, as well as the education of people on existing resources.
These findings and other considerable outcomes identify critical gaps within the community. The extensive findings offer the following insights:
-- Communication gaps exist between neurologists, people with
Parkinson's disease and caregivers
-- Challenges the community faces in disease management; people with
Parkinson's, neurologists and caregivers have a strong desire for
resources and tools that support improved disease management and daily
-- Recognition that exercise is an important part of disease management
-- Clinical trial education is necessary
"Identifying the needs is one part of the equation," said Robin Elliott, Executive Director of the Parkinson's Disease Foundation, "the other piece is working together as a community to address the unfilled gaps. As an organization dedicated to educating and supporting the Parkinson's disease community, we believe it is important to examine these crucial issues so we can continue moving forward and assist in improving the daily lives of those living with this disease."
The Parkinson's Knowledge and Needs Exchange(TM) Survey was commissioned and funded by Boehringer Ingelheim Pharmaceuticals, Inc. GfK Roper Public Affairs & Media designed and conducted the survey on behalf of Boehringer Ingelheim Pharmaceuticals, Inc. in collaboration with the Parkinson's Disease Foundation. The Survey was conducted via telephone among a nationally representative sample of neurologists (301) who treat at least five adults with Parkinson's per month and their patients and caregivers (208 people with Parkinson's and 200 caregivers). With nearly one million people affected by Parkinson's disease in the United States, and one person diagnosed every nine minutes these findings offer guidance on how to further support the community and improve disease management.
Communication Gaps Exist
While people with Parkinson's disease and caregivers take an active role in discussions with their doctor, findings from the survey revealed a need for resources and tools to help ensure that clear communication channels exist and to enable the exchange of necessary and desired information. For example, more than six in ten surveyed neurologists who have discussed one or more issues with at least a few people with Parkinson's disease or their caregivers, do not discuss certain issues with most or all of their patients and caregivers because they are concerned with overwhelming them with too much information, or because they are not asked about these issues. One-third of neurologists surveyed also believe they lack the necessary information to respond to certain questions and issues.
Further, findings from the survey show the need to extend dialogue beyond the clinical aspects of Parkinson's disease. Conversations do not always address the impact on daily living or disease management challenges that Parkinson's disease can have on patients and caregivers.
-- Neurologists (88 percent) surveyed perceive financial concerns to be the
greatest obstacles for caregivers, and yet compared to other topics,
speak with the least number of caregivers about this subject (35
-- Half of caregivers surveyed would like their physician to discuss the
financial or legal impact more often during their discussions
surrounding disease management.
-- Findings showed that nearly one in four neurologists does not discuss
healthy lifestyle changes with people with Parkinson's disease or
caregivers, despite nearly all physicians (85 percent) thinking that
maintaining a healthy lifestyle is an obstacle for both groups.
-- Moreover, people with Parkinson's disease are two times less likely
than their physicians to initiate conversations about maintaining a
healthy lifestyle, even though people with Parkinson's disease find
healthy lifestyle maintenance challenging.
Resources are Needed for Improved Disease Management
There is a strong desire for tangible and targeted resources and tools that support improved disease management and daily living. Neurologists (93 percent), people with Parkinson's (84 percent) and caregivers (88 percent) would find a single resource helpful.
One of these resources is the recently-expanded Parkinson's Information Service (PINS) of the Parkinson's Disease Foundation - a unique toll free/ online service that offers on-the-spot personalized and comprehensive answers to questions about Parkinson's disease. "PINS is one example of a vital support service that is currently available," said Mr. Elliott.
Additional survey findings include:
-- More than half of all caregivers and patients (54 percent and 59 percent
respectively) surveyed are not utilizing Parkinson's organizations
and the benefits provided throughout the community - greater awareness
-- 9 out of 10 people with Parkinson's disease surveyed would find a
discussion guide with sample questions for the doctor to be a useful
resource; 87 percent of caregivers surveyed agree.
-- 84 percent of people with Parkinson's disease and 81 percent
caregivers expressed interest in learning how to make homes more
Importance of Exercise
People with Parkinson's and caregivers rely on their doctor as a primary source for information on exercise. Conversely, neurologists surveyed mainly rely on physical therapists for information on exercise programs specific for people with Parkinson's disease. It is important that healthcare providers maintain ongoing dialogue and share information and resources, ensuring people with Parkinson's disease receive valuable tools on a continuous basis.
Although people with Parkinson's disease reported that they find it challenging to follow an exercise routine as a result of their disease:
-- 92 percent surveyed would be interested in a form of exercise designed
for people with the disease, and
-- 87 percent surveyed would be more likely to exercise if a program
especially developed for people with Parkinson's disease existed.
Education on Clinical Trials is Crucial
Clinical studies are crucial in furthering Parkinson's disease research. Survey results illustrate that while there is interest in participation, all groups are in need of more information. It is particularly important that neurologists are educated, as a doctor's recommendation is most influential in motivating people with Parkinson's disease (90 percent) to become involved in clinical studies and in encouraging caregivers to recommend participation (93 percent). These findings also revealed:
-- Neurologists surveyed who have not recommended a clinical study to
people with Parkinson's disease cite a lack of information (77
percent) on study opportunities as their top reason for not doing so.
-- Neurologists would be open to learning more about clinical trials
looking for people with Parkinson's disease in their areas (89
percent); 85 percent would find a website with this information helpful.
"Clinical trials are essential to understanding and finding new treatments," said Mr. Elliott. He noted that the findings of the new survey highlight the need for spreading the word on information resources such as the recently re-launched www.PDtrials.org, a website for the entire Parkinson's community that provides information on clinical studies that are currently seeking participants. Additional information can be found at www.clinicaltrials.gov. "This survey provides us with clear validation that such information is needed by the community," he said.
About the Survey
The Parkinson's Knowledge and Needs Exchange(TM) Survey was commissioned and funded by Boehringer Ingelheim Pharmaceuticals, Inc. GfK Roper Public Affairs & Media designed and conducted the survey on behalf of Boehringer Ingelheim Pharmaceuticals, Inc. in collaboration with the Parkinson's Disease Foundation in the United States between January 22, 2008 and April 21, 2008. All surveys were conducted via telephone among a nationally representative sample of neurologists (301) who treat at least five adults with Parkinson's per month and their patients and caregivers (208 people with Parkinson's and 200 caregivers).
Neurologists were sampled from the American Medical Association (AMA) Directory using probability selection procedures. To be eligible for interview, a neurologist must have currently been treating at least five adults with Parkinson's disease per month. Additionally, neurologists were asked to recruit representative samples of adults diagnosed as having Parkinson's disease and caregivers of such people that they had seen within the past six months. Recruited participants completed the survey by dialing into an 800 number so that doctor-patient confidentiality was not compromised.
The margin of error for the findings is +/- 6 percentage points for the neurologists and +/-7 percentage points for people with Parkinson's disease and caregivers at the 95 percent confidence level.
About Parkinson's Disease
Parkinson's disease is a progressive neurological disorder that affects nearly one million people in the U.S. It is the second most common chronic neurological disorder in older adults after Alzheimer's. Every nine minutes someone is diagnosed with Parkinson's disease. Symptoms include tremor, muscle rigidity, slowed motion, shuffling gait, and a loss of facial expression. The symptoms vary from individual to individual, but become more severe over time. Although promising research is being conducted, there is currently no cure for Parkinson's disease.
About the Parkinson's Disease Foundation (PDF)
The Parkinson's Disease Foundation is a leading national presence in Parkinson's disease research, education and public advocacy. We are working for the nearly one million people in the US living with Parkinson's by funding promising scientific research and supporting people with Parkinson's, their families and caregivers through education programs and support services. Since its founding in 1957, PDF has funded over $70 million worth of scientific research in Parkinson's disease, supporting the work of leading scientists throughout the world.
For more information, please visit www.pdf.org.
The Parkinson's Information Service (PINS) is available to answer your questions about Parkinson's disease and can be reached at (800) 457-6676.
About Boehringer Ingelheim Pharmaceuticals, Inc.
Boehringer Ingelheim Pharmaceuticals, Inc., based in Ridgefield, CT, is the largest U.S. subsidiary of Boehringer Ingelheim Corporation (Ingelheim, Germany) and a member of the Boehringer Ingelheim group of companies.
The Boehringer Ingelheim group is one of the world's 20 leading pharmaceutical companies. Headquartered in Ingelheim, Germany, it operates globally with 135 affiliates in 47 countries and approximately 39,800 employees. Since it was founded in 1885, the family-owned company has been committed to researching, developing, manufacturing and marketing novel products of high therapeutic value for human and veterinary medicine.
In 2007, Boehringer Ingelheim posted net sales of US $15.0 billion (10.9 billion euro) while spending approximately one-fifth of net sales in its largest business segment, Prescription Medicines, on research and development.
For more information, please visit us.boehringer-ingelheim.com.
About Boehringer Ingelheim Pharmaceuticals, Inc. and Parkinson's Disease
For years, Boehringer Ingelheim Pharmaceuticals, Inc. has been committed to providing new and valuable tools and resources to support and fill unmet needs within the Parkinson's disease community. The company is dedicated to developing and disseminating educational programs and tools, to support disease management, with the hopes of enhancing communication and treatment. Boehringer Ingelheim Pharmaceuticals, Inc. respects healthcare professionals' ongoing devotion to patients and caregivers and is dedicated to working to
support them in this endeavor by providing these tools and resources to help healthcare professionals continue to provide excellent care.
About GfK Roper Public Affairs & Media
GfK Roper Public Affairs & Media is a division of GfK Custom Research North America. The division specializes in customized public opinion polling, media and communications research, and corporate reputation measurement -- in the U.S. and globally. In addition to delivering a broad range of customized research studies, GfK Roper Public Affairs & Media draws from GfK's syndicated consumer tracking services, GfK Roper Reports(R) U.S. and GfK Roper Reports(R) Worldwide, which monitor consumer values, beliefs, attitudes and behaviors in the U.S. and more than 25 other countries.
About GfK Custom Research North America
Headquartered in New York, GfK Custom Research North America is part of the GfK Group. With home offices in Nuremberg, Germany, the GfK Group is the No. 5 market research organization worldwide. Its activities cover the three business sectors of Custom Research, Retail and Technology and Media. The Group has 115 companies covering over 90 countries. Of a total of approximately 9,297 employees (as of March 31, 2008), 80 percent are based outside Germany.
Source Date: Nov 06 2008