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Most Cancer Patients Satisfied With Clinical Trial Experience
Yet Few Aware of Opportunity
PHILADELPHIA -- 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 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.
Survey Results
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 treatment.
"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 cancer.
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.
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