NEW YORKAbout 85% of cancer patients in a national survey said
they were unsure or unaware of their possible eligibility to be in
clinical trials, and 75% said they would have tried to enroll had
The Harris Interactive survey of approximately 6,000 cancer patients,
as well as physicians and the general public, was sponsored by the
Coalition of National Cancer Cooperative Groups Inc., Oncology
Nursing Society, Cancer Leadership Council, and Cancer Research
Foundation of America. The survey is the first in a series of polls
that will examine the reasons for low enrollment in cancer clinical trials.
survey also found that 71% of the cancer patients who are aware that
they might be able to take part in trials do not try to enroll. The
patients cited one or more reasons why they chose not to participate
in a clinical trial (see Table).
The patients who did not participate were similar demographically to
those who did participate in trials and had similar health insurance.
But cancer patients who were not aware of clinical trials tended to
be older, less affluent, and less well educated.
According to the study, the vast majority of those who have taken
part in trials report having a positive experience. Ninety-seven
percent said they were treated with dignity and respect, and that the
quality of care they received was excellent or
good. More than 80% said they did not receive more tests
than they felt were necessary, and 86% said their treatment was
covered by insurance.
Clinical trials represent the very best care we have to offer
for many cancer patients, yet many do not take advantage of the
opportunity because of lack of awareness or misconceptions of what a
clinical trial really is, Robert Comis, MD, said at a press
briefing to introduce the survey results. Dr. Comis is president of
the National Cancer Cooperative Groups and group chair of the Eastern
Cooperative Oncology Group.
Of all adult cancer patients, only 3% to 5% participate in clinical
trials. Most patients simply do not know about clinical trials
that could help them, he said.
Learning about the attitudes of patients, the public, and physicians,
Dr. Comis said, will help the four sponsors of the current and
upcoming polls develop a strategic plan for increasing the clinical
trial participation of adult cancer patients. The goal, he said, is
to have from 10% to 15% of all cancer patients take part in clinical
The potential to meet this goal is there, Dr. Comis said. According
to the survey, 8 of 10 Americans polled said that if they were
diagnosed with cancer, they would be willing to participate in a
clinical trial for their initial treatment. Almost 9 of 10 said that
they would be willing to participate in a cancer clinical trial if
their initial treatment failed. Most Americans would also be willing
to participate in a clinical trial designed to prevent cancer.
The study also demonstrated that virtually all oncologists and an
overwhelming majority of primary care physicians would like to see
more of their own cancer patients participate in clinical trials and
be given the opportunity to participate in clinical trials at
different stages of treatment.
But the study also found that physicians did not uniformly encourage
participation. The physicians cited patient reluctance, exclusion due
to strict eligibility criteria, and the amount of paperwork
associated with trial participation as inhibiting factors.
Larry Norton, MD, head of Solid Tumor Oncology, Memorial
Sloan-Kettering Cancer Center, said that patient misconceptions about
clinical trials need to be corrected, most especially the notion that
patients in the control arm of a trial might be given a placebo
rather than standard care.
Nobody is getting shafted in phase III trials, Dr. Norton
said. The very worst that can happen is they get the standard
therapy, and theyre getting more than the standard therapy.
Theyre getting carefully considered, carefully designed
standard therapy, rigorously arranged and scrutinized by experts both
within the institution and around the country, in some cases
throughout the world, who are carefully looking at all the
information and making sure that everything is done perfectly.
He said that the data clearly show that patients getting standard
therapy in phase III clinical trial do better than patients getting
standard therapy in the community setting.
Communicating information about cancer is always tricky, Dr. Norton
said, never more so than in the doctors office at the time of
diagnosis. For that reason, Dr. Norton questioned the validity of the
surveys findings that 85% of patients said they were never told
or did not know about the possibility of their taking part in cancer trials.
I have spent time with patients who dont remember a
conversation a day or two later. Sometimes they shut off. We
dont know what percentage in that study just didnt
recall. Its nobodys fault. We just have to find better
ways of communicating, Dr. Norton said.
Raising public understanding of clinical trials is a task that
doctors and the larger society have to address, he said. If the
population had a better general knowledge of the benefits of clinical
trials, patients would automatically ask about them when they come to
their doctors offices.