Majority of Physicians Who Treat Parkinson's Do Not Refer Patients to
Clinical Trials, According to National Survey
Wednesday June 22, 9:00 am ET
- 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® on behalf of the
Advancing Parkinson's Therapies (APT) campaign.
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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® 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
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Source: The Michael J. Fox Foundation for Parkinson's Research
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