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Classic Symptoms of Parkinson's Disease May Not Be The Most Disabling
- Oct 21 2003
The non-motor symptoms that Parkinson's disease (PD) patients experience, such as loss of energy and pain, appear to have a greater impact on their quality of life than the motor symptoms typically associated with the disease, such as tremor. This surprising finding of a new Harris Interactive(R) study may alter the way physicians assess and treat their patients, according to top Parkinson's disease researchers.
The results of this nationwide study, titled "Impact of Parkinson's Disease on the Quality of Life," were presented today at a panel discussion prior to the opening session of the American Neurological Association's annual meeting. Parkinson's disease is a chronic, neurodegenerative disorder affecting more than one million adults in the United States; the disease affects the portion of the brain that controls movement and muscle control.
"This is a key finding," said panelist Matthew B. Stern, MD, Parker Family Professor of Neurology and Director, Parkinson's Disease and Movement Disorders Center, University of Pennsylvania Health System. "Parkinson's is a complex disease that has identifiable motor and non-motor symptoms. Non-motor symptoms can include pain, loss of energy, sleep disturbances and anxiety. Although these symptoms may not be immediately apparent to the physician, they are highly significant to the patient's quality of life -- a cue to physicians to take a more global view of the disease and how it is treated."
The panel focused on results from the study, which was based on the responses to an online survey of 228 Parkinson's disease patients who have had the disease for at least five years. The survey, which Harris Interactive conducted, was fielded August through September 2003, and was supported by Amarin Pharmaceuticals (NASDAQ:AMRN) and sponsored by WE MOVE (Worldwide Education and Awareness for Movement Disorders). Panelists discussing the findings were Dr. Stern; William Koller, MD, PhD, Professor of Neurology, Mt. Sinai School of Medicine (New York); Ray Watts, MD, Chairman of Neurology, University of Alabama at Birmingham; Judith Blazer, MS, Executive Director, WE MOVE; and Lori Stone, PhD, Senior Research Associate, Harris Interactive.
The Disruptive Impact of "Off" Time
According to the study findings, top reported unmet needs of PD patients include the disabling symptoms and emotional stress that accompany their "off" time, the period between medication doses when the effectiveness of medication declines and symptoms of Parkinson's disease return. Seventy-five percent of study participants reported experiencing "off" time. Fifty-three percent of patients report that they are dissatisfied with the amount of "off" time they experience. Although they are not the most frequently occurring symptoms during "off" time, loss of energy, walking problems and pain are reported as the most disabling symptoms PD patients' experiences.
According to the survey, these symptoms force patients to make many accommodations to their daily lives, which in turn, have a significant impact on their quality of life. PD patients report that their ability to walk, drive, work, read and talk is impaired during "off" time. These problems appear to be amplified in PD patients who are also depressed, a condition that more than one-third of survey respondents reported experiencing. In addition, the unpredictability of "off" time exacts an emotional cost on PD patients, leaving them depressed, feeling hopeless and embarrassed.
The Complexity of Medication Dosing
On average, Parkinson's patients who participated in the survey take 19 pills per day, with some taking as many as 100 pills per day. In addition, more than half (59 percent) of patients reported swallowing difficulties.
"Many of my Parkinson's patients express a high level of discontent with not only multiple doses of medications but the feeling that many of their most troubling symptoms are not being addressed," stated Dr. Koller. "The way neurologists treat Parkinson's disease and the future development of innovative therapies will now need to address both motor and non-motor symptoms."
Hopes for New Treatments
When asked to reveal their preferences for new Parkinson's treatments, survey respondents highlighted the desire for fewer side effects, a more predictable response and improvement in daily "off" time, characteristics considered three to four times more important than the other seven options provided in the survey.
Blazer, representing the patient information and advocacy group WE MOVE, explained, "Historically, Parkinson's patients were treated according to the identifiable physical limitations associated with the disease. As the Harris Interactive study points out, the importance of the non-motor symptoms experienced during 'off' time has often been overlooked in treating Parkinson's patients."
"The data from this study will be instrumental in assisting physicians in providing care for their Parkinson's patients. We are pleased to be able to support this important study," said Michael Coffee, President and COO, Amarin Pharmaceuticals.
The full survey report may be obtained by emailing: firstname.lastname@example.org
A digitized replay of the panel discussion is available from Monday, October 20, 10:30 a.m. Pacific, to Wednesday, October 22, 12:00 p.m. Pacific, by dialing 1-800-475-6701 and entering access code 701669.
This study was conducted online within the United States between August 19 and September 8, 2003, among a sample of 228 U.S. adults, aged 18 years and over, who have had Parkinson's disease for a minimum of five years. Responses were weighted by age and gender using current U.S. epidemiological data.
Patients with Parkinson's disease were recruited from four different sources. The largest number of survey respondents was provided through the People Living With Parkinson's website. People Living With Parkinson's is a non-profit organization founded by two Parkinson's disease patients and dedicated to educating and supporting Parkinson's disease patients. The content of the online questionnaire was developed from research gathered during a series of focus groups with Parkinson's disease patients and with the help of medical advisors and WE MOVE, a non-profit organization focusing on movement disorders, including Parkinson's disease.
In theory, with a probability sample of this size, one can say with 95 percent certainty that the results have a statistical precision of plus or minus 6.4 percentage points of what they would be if the entire population of those with Parkinson's disease in the United States had been polled with complete accuracy. Unfortunately, there are several other possible sources of error in all polls or surveys that are probably more serious than theoretical calculations of sampling error. They include refusals to be interviewed (non-response), question wording and question order, interviewer bias, weighting by demographic control data and screening (e.g., for likely voters). It is impossible to quantify the errors that may result from these factors. This online sample was not a probability sample.
These statements conform to the principles of disclosure of the National Council on Public Polls.
About WE MOVE
WE MOVE, a not-for-profit organization, has been educating and informing the movement disorder community for over a decade. WE MOVE believes that increased knowledge and understanding promote timely, accurate diagnosis and up-to-date treatment, resulting in a better quality of life for individuals affected by movement disorders.
About Amarin Pharmaceuticals, Inc.
Amarin Corporation plc is a specialty pharmaceutical company focused on neurology. The Company plans to become a leader in these therapeutic categories by providing innovative products and solutions that address significant unmet medical needs. Amarin has seven pharmaceutical products on the US market along with a development pipeline that includes two late-stage candidates: Zelapar(TM) (selegiline HCl orally disintegrating tablets) for Parkinson's disease and LAX-101, a proprietary compound for Huntington's disease.
About Harris Interactive(R)
Harris Interactive www.harrisinteractive.com is a worldwide market research and consulting firm best known for The Harris Poll(R),and for pioneering the Internet me thod to conduct scientifically accurate market research. Headquartered in Rochester, New York, U.S.A., Harris Interactive combines proprietary methodologies and technology with expertise in predictive, custom and strategic research. The Company conducts international research through wholly owned subsidiaries -- London-based HI Europe and Tokyo-based Harris Interactive Japan -- as well as through the Harris Interactive Global Network of local market- and opinion-research firms, and various U.S. offices.
Source Date: Oct 21 2003