Majority of Physicians Who Treat Parkinson's Do Not Refer Patients to
Clinical Trials, According to National Survey
[ PR Newswire · 2005-06-22 ]
- Low Awareness Seen as Major Barrier to Clinical Trial
Participation
- PD Patients Lack Information but Cite Support Groups as Primary
Source
of Data
- Parkinson's Groups Join to Create National Education Campaign and
Web
site www.PDtrials.org to Address Issues
NEW YORK, June 22 /PRNewswire/ -- While almost all (more than 96 percent)
of the physicians (i) in the United States who treat people with
Parkinson's agree that clinical trials are necessary to find better
treatments for the disease, the majority of physicians have discussed
clinical trials with just 10 percent or less of their patients with
Parkinson's disease (65 percent of neurologists and 54 percent of primary
care physicians/gerontologists) and have never referred a patient to a
clinical trial (53 percent of neurologists and 83 percent of primary care
physicians/gerontologists). These are among the highlights of a recent
nationwide survey commissioned by The Michael J. Fox Foundation for
Parkinson's Research and conducted by Harris Interactive(R) on behalf of
the Advancing Parkinson's Therapies (APT) campaign.
Major Findings
The survey found that knowledge and opinions among U.S. Parkinson's
patients (ii) closely mirror those of physicians. Almost all (95 percent)
of the patients surveyed agree that clinical trials for Parkinson's are
necessary to find better treatments, yet only 11 percent report that
their doctor ever suggested that they participate in a trial. At the same
time, those patients surveyed who are aware of trials cite support groups
(40 percent) and other people with Parkinson's disease (27 percent) as
the most common sources of information about trials -- only 11 percent
cite their doctors.
Lack of adequate information about clinical trials was identified as a
barrier to clinical trial enrollment. Only 14 percent of primary care
physicians, 21 percent of neurologists and 18 percent of patients
surveyed indicated that they are somewhat or very satisfied with the
amount of information available about clinical trials for Parkinson's
disease.
"People are not getting the information they need to make decisions as to
whether to participate in a trial," said Michael J. Fox. "The fewer
people who go into trials, the longer it will take to develop new
treatments. To meet this challenge the Parkinson's community has
initiated a new campaign called Advancing Parkinson's Therapies to make
sure patients and physicians are better informed."
APT Launches Online Clinical Trials Resource
The APT campaign has launched http://www.PDTrials.org, a major initiative
designed to educate people about the importance of clinical trials,
explain how clinical trials work and provide a comprehensive,
user-friendly, web-based resource to enable patients and caregivers to
identify and locate appropriate Parkinson's disease clinical trials. The
campaign seeks to improve patient- physician communication about clinical
trials and provides useful information to help patients and their
physicians determine whether enrollment in a clinical trial is an
appropriate option.
Survey Reveals Challenges
The Harris survey results revealed that in addition to dissatisfaction
with the amount of information available, doctors and Parkinson's
patients have reservations about clinical trials. Slightly more than half
of physicians (52 percent) agree they would not recommend that a patient
enroll in a trial if their disease is well-controlled. And, while 78
percent of patients surveyed indicate that they trust the doctors and
scientists who run clinical trials to "do the right thing," 77 percent
believe that if they participate in a clinical trial they may receive a
placebo instead of a drug that will help them. In addition, 72 percent
expressed concern about continued access to medication once the trial has
stopped.
"Most patient concerns can be addressed through specific types of
education and information," said Robin Elliott, Executive Director of the
Parkinson's Disease Foundation, the lead organization of the APT
collaboration. "For example, individuals may not know that some trials
require no more than completing a family history survey or providing a
DNA sample. People must also fully understand the informed consent
process and the rights it gives them as trial participants. Advancing
Parkinson's Therapies, through its online resource,
http://www.PDTrials.org, provides valuable information that can help
empower all the major stakeholders -- patients, caregivers, physicians,
researchers and trial sponsors."
Currently less then one percent of people with Parkinson's are
participating in clinical research. This is far short of the level that
researchers anticipate will be needed for clinical studies over the next
two to three years, including studies of therapies to slow or stop
disease progression and to improve symptoms such as tremors. This
disparity may result in severe delays in the availability of new
treatments that could offer relief for the nearly one million people in
the U.S. who live with Parkinson's.
About the Survey
Harris Interactive(R) conducted the survey on behalf of the APT campaign
with funding provided by The Michael J. Fox Foundation for Parkinson's
Research, in the United States between January 17, 2005 and March 2,
2005. The physician's survey was conducted online among 500 physicians on
the American Medical Association's list of physicians who treat patients
with Parkinson's disease; 250 are neurologists and 250 are
PCPs/gerontologists. The patient survey was conducted by mail among 518
adults aged 18 and over with Parkinson's disease. Data from the patient
sample were not weighted and are only representative of those patients
surveyed. Data from the physicians sample were weighted to the American
Medical Association list of doctors with regard to years in practice,
gender and region.
In theory, with samples of this size, one could say with 95 percent
certainty that the overall results for the physicians sample have a
sampling error of plus or minus 5 percentage points and sampling error
for the results of neurologists and PCP's/gerontologists is plus or minus
7 percentage points.
Sampling error for the overall patient's results is plus or minus 5
percentage points and sampling error for the sub-sample results of
patients who are aware of clinical trials (123) is plus or minus 9
percentage points. This online sample was not a probability sample.
Following are some additional highlights from the survey:
- Of neurologists who have ever referred a Parkinson's patient to a
clinical trial, the majority (54 percent) are likely to refer
patients
within five years of diagnosis.
- Nearly 80 percent of patients surveyed stated that they would be
somewhat, very or extremely likely to participate in a clinical
trial if
one were available in their area.
- Of patients surveyed, 45 percent were diagnosed with Parkinson's by
a
neurologist while 37 percent received a diagnosis from their PCP or
family practitioner; 64 percent of Parkinson's patients surveyed
are
currently under the care of a neurologist and 40 percent see a PCP
or
family practitioner.
About the Advancing Parkinson's Therapies (APT) Campaign
Advancing Parkinson's Therapies (APT) is comprised of the major
Parkinson's patient voluntary groups to accelerate the development of new
treatments for Parkinson's by increasing education and awareness about
clinical trials among the Parkinson's community. APT is led by the
Parkinson's Disease Foundation in collaboration with the American
Parkinson Disease Association, The Michael J. Fox Foundation for
Parkinson's Research, the National Parkinson Foundation, the Parkinson's
Action Network, The Parkinson Alliance and WE MOVE, and is advised by
National Institute of Neurological Disorders and Stroke, the Parkinson
Study Group and the Parkinson Pipeline Project. Visitors to
http://www.PDtrials.org can search for a clinical trial by symptom,
location, trial type or sponsor and can receive the latest news and views
on what's happening in the world of Parkinson's trials. Free educational
materials, such as a comprehensive guide to clinical trials, can be
ordered through http://www.PDtrials.org and the campaign's toll-free
number (888) 823-8889.
About Parkinson's Disease
More than six million people worldwide, including one million in the
United States live with Parkinson's disease -- a chronic, degenerative
neurological disorder that is characterized by symptoms that typically
progress from mild tremors to complete physical incapacitation. In its
final stages, Parkinson's may leave people unable to move or speak.
Despite modest advances in pharmaceutical and surgical therapies, there
is no known cure for Parkinson's disease.
To date, The Michael J. Fox Foundation for Parkinson's Research has
funded or directed more than $50 million in research. For more
information on The Michael J. Fox Foundation for Parkinson's Research,
visit http://www.michaeljfox.org.
(i) Physicians defined as neurologists and primary care
physicians/gerontologists
(ii) Parkinson's patient defined as U.S. adults aged 18 and over
surveyed
who have Parkinson's disease
SOURCE The Michael J. Fox Foundation for Parkinson's Research
-0- 06/22/2005
/CONTACT: Dana MacNaughton, +1-212-509-0995 ext.242,
[log in to unmask]
/Web site: http://www.michaeljfox.org
http://www.PDTrials.org /
-------------------------------------------------------------
SEE ALSO PDPipeline - patient advocacy site for development on new
treatments and clinical trials.
www.pdpipeline.org
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