Majority of Physicians who Treat Parkinson's do not Refer Patients to Clinical Trials, According to National Survey
The survey found that knowledge and opinions among U.S. Parkinsonís patients[ii] closely mirror those of physicians. Almost all (95 percent) of the patients surveyed agree that clinical trials for Parkinsonís 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 Parkinsonís disease (27 percent) as the most common sources of information about trials Ė 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 Parkinsonís disease.
ďPeople are not getting the information they need to make decisions as to whether to participate in a trial,Ē said Michael J. Fox. ďThe fewer people who go into trials, the longer it will take to develop new treatments. To meet this challenge the Parkinsonís community has initiated a new campaign called Advancing Parkinsonís Therapies to make sure patients and physicians are better informed.Ē
APT Launches Online Clinical Trials Resource
Survey Reveals Challenges
The Harris survey results revealed that in addition to dissatisfaction with the amount of information available, doctors and Parkinsonís 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 ďdo the right thing,Ē 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.
ďMost patient concerns can be addressed through specific types of education and information,Ē said Robin Elliott, Executive Director of the Parkinsonís Disease Foundation, the lead organization of the
Currently less then one percent of people with Parkinsonís 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
About the Survey
Harris Interactiveģ conducted the survey on behalf of the
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 PCPís/gerontologists is plus or minus 7 percentage points.
Sampling error for the overall patientís 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 Parkinsonís 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 Parkinsonís by a neurologist while 37 percent received a diagnosis from their
PCPor family practitioner; 64 percent of Parkinsonís patients surveyed are currently under the care of a neurologist and 40 percent see a PCPor family practitioner.
About the Advancing Parkinsonís Therapies (APT) Campaign
Advancing Parkinsonís Therapies (
[i] Physicians defined as neurologists and primary care physicians/gerontologists
[ii] Parkinsonís patient defined as