PHILADELPHIA, Pa., (June 5, 2006) - While the
majority of cancer clinical trial participants are highly satisfied with their
experience, as few as one in 10 cancer survivors report ever being made aware
of trial opportunities during treatment, according to Cancer clinical trials
awareness and attitudes in cancer survivors, a survey conducted by the
Coalition of Cancer Cooperative Groups and Northwestern University. Survey
results from nearly 2,000 U.S. cancer survivors polled were reported at the
American Society of Clinical Oncology (ASCO) annual meeting in Atlanta today.
A clinical trial is a carefully monitored medical
research study in which people participate as volunteers to test new methods of
prevention, screening, diagnosis, or treatment of a disease. All new methods
must first be tested in clinical trials, before they are approved by the FDA
(Food and Drug Administration) and made available to the public.
Currently, there are 4,970 clinical trials
underway in the United States for the diagnosis, prevention, treatment, and
management of symptoms for cancer, according to the National Institute of
Health (NIH)i. Of these studies an estimated 3,200 pertain to the treatment of
cancer, according to the National Cancer Institute (NCI) PDQ database. The NCI
also shows that 1,405 of these treatment studies are being conducted with
federal funding through the NCI; the remainder are being conducted by various
private sector sponsors such as pharmaceutical companies, academic institutions
and single investigators.
"We are at a real turning point in the development
of new cancer treatments with the large number of clinical trials currently
underway, but too few patients are aware that these trials even exist," said
Robert L. Comis, M.D., president and chairman of the Coalition of Cancer
Cooperative Groups. "Serious lag times will continue to occur in completing
these studies unless there is an improved dialogue between the physician and
patient about trial opportunities."
Pool of participants:According to
the American Cancer Society, there are approximately 1.5 million new cancer
diagnoses each year; additionally, approximately 10 million people are living
with a cancer history. Of this growing population of survivors, 1.5 million
were diagnosed more than 20 years ago. This achievement is a direct result of
clinical trial research producing more effective methods of prevention,
detection and treatment. The Coalition of Cancer Cooperative Group estimates
that nearly 200,000 newly diagnosed patients each year may be clinically
eligible to participate in a cancer treatment trial; currently, only about
50,000 patients participate per year.Dr. Comis and Jon D. Miller, Ph.D.,
professor and director of the Center for Biomedical Communications at the
Feinberg School of Medicine, Northwestern University, developed the survey and
analyzed its data.
The survey determined that only 10 percent of the 1,788 cancer survivors knew
participation in a cancer clinical trial was an option. Of those who learned
about trials, 73 percent cited their physician as the source of information.
The participants’ type of cancer influenced their awareness, as did type of
"One of the most important steps a patient can take to regain
some control when faced with a cancer diagnosis is to be as informed as
possible about his or her disease,” said Dr. Miller. "It was encouraging to
find that most patients would be inclined to participate if enrollment in a
clinical trial was presented as a treatment option."
Of patients surveyed, knowledge of trials significantly differed
by cancer type (p <0.01 for all). The highest proportion of awareness
occurred among survivors of leukemia (26 percent), followed by breast cancer
(15 percent), lymphoma (14 percent), lung cancer (14 percent), and prostate
cancer (12 percent). Awareness rates dropped to 10 percent and less for
melanoma, renal, colon or rectal, bladder, other women’s cancers and thyroid
Awareness also varied according to the type of treatment a
patient received. Patients who received surgery alone had a 5 percent level of
awareness, whereas survivors treated with some form of systemic therapy
reported an 18 percent awareness level and the highest level of participation.
Overall, three percent of survivors participated in a clinical
trial, and an equal percentage declined. Enrollment in a cancer clinical trial
was dependent upon the type of treatment the patient received, with 8 percent
of the 492 patients who received some form of systemic therapy having entered a
clinical trial as opposed to other treatments, which ranged from 1-3 percent.
Clinical trial participants reported very high levels of
satisfaction, with several descriptions of their experience. Specifically, 96
percent said they were treated with dignity and respect, 92 percent said they
had a positive experience and 91 percent would recommend that family or friends
participate in a trial if faced with cancer. Only 9 percent said they felt like
a guinea pig, contrary to the commonly held perception.
About the Survey
Dr. Miller and his colleagues at Northwestern University and Knowledge Networks
conducted the survey in March and April of 2005. The survey was supported by
unrestricted educational grants to the Coalition from Amgen, Inc., C-Change,
and the Lance Armstrong Foundation.
Survey participants were obtained from a sample of 40,000 adults, recruited by
Knowledge Networks. Participants agreed to weekly surveys in exchange for a
free WebTV box and ISP service. Of the 2,029 who reported a cancer diagnosis,
1,788 agreed to participate in the study reported at ASCO.
About the Coalition of Cancer Cooperative Groups
The Coalition of Cancer Cooperative Groups is a non-profit charitable
organization whose mission is to improve the quality of life and survival of
cancer patients by increasing participation in cancer clinical trials.