Despite pressing need, survey finds most americans unlikely to enroll in clinical trials
MedicalXpress | May 24, 2016 | See Original Here
[COMMENT: With the incredible need to find a cure for Rhabdomyosarcoma, I truly hope that all families experiencing this horror thinks carefully about the need to enroll in a clinical trial. (Alan)]
The lack of participation in clinical research may be the Achilles’ heel of today’s cancer community. According to a new survey of more than 1,500 consumers and nearly 600 physicians conducted on behalf of Memorial Sloan Kettering Cancer Center (MSK), only 35 percent of Americans indicated that they were “likely” to enroll in a clinical trial. Other studies have shown that only 4 percent of cancer patients enroll in clinical trials nationally each year.
Additionally, the new data shows that only 40 percent of Americans have a positive overall impression of clinical trials. Taken together, these statistics are sobering given that nearly every advance in cancer today was first evaluated in a clinical trial. Clinical research is increasingly dependent upon larger numbers of cancer patients participating. Fortunately, education makes a measurable and immediate difference. After reading a brief statement defining clinical trials, the number of respondents who had a positive impression of these studies jumped significantly, from 40 to 60 percent.
“When it comes to advancing cancer care, clinical research is the rocket fuel for better treatments, more accurate diagnoses, and, ultimately, cures,” said José Baselga, MD, PhD, Physician-in-Chief and Chief Medical Officer at MSK, where more than 900 cancer clinical trials are currently under way. “If this trend of low enrollment continues, we will face a crisis in cancer research and discovery. Further education is the key to participation and progress.”
Consumer respondents cited a range of concerns as barriers to clinical trial participation:
- Worry over side effects / safety (55 percent)
- Uncertainty about insurance and out-of-pocket costs (50 percent)
- Inconvenience of trial locations (48 percent)
- Concerns about getting a placebo (46 percent)
- Skeptical of a treatment that is not yet proven to work (35 percent)
- Worries over feeling like “guinea pigs” (34 percent)
Physicians were also asked about what they feel are the top barriers to patient participation. Their responses echoed consumer feedback, with side effect / safety worries and concerns about getting a placebo cited the most (both at 63 percent); even more physicians than consumers (53 percent) expressed concern that individuals would not want to feel like “guinea pigs.”
“While concerns regarding clinical trials are understandable, it is critical that the cancer community address common myths and misunderstandings around issues like effectiveness, safety, use of placebo, and at which point in treatment a trial should be considered,” said Paul Sabbatini, MD, Deputy Physician-in-Chief for Clinical Research at MSK. “For example, the vast majority of clinical trials do not involve a placebo.”
Viewed as a Last Resort by American Physicians
The survey also polled nearly 600 physicians around the country. While many clinical trials are available to patients during the earliest phases of treatment, 56 percent of physicians said they considered clinical trials late in treatment, with 28 percent saying they consider them “as a treatment of last resort.” Only one-third (32 percent) said they discuss the topic with their patients at the beginning of treatment.
“Failing to consider clinical trials at every stage of cancer diagnosis and treatment can represent a significant missed opportunity, primarily for patients, as well as for doctors and researchers trying to develop better therapies,” said Dr. Sabbatini. “It’s critical that we spread the word: Clinical trials offer our best thinking toward finding better ways to prevent, treat, and cure cancer, and there are options for patients and their families to consider early on in treatment.”
Hospital Choice and Access to Novel Cancer Treatments
Most consumers (72 percent) see no difference in care between hospitals that offer clinical trials and those that do not. Yet when considering a hospital for cancer care, almost three out of four consumers (74 percent) indicate it is important that a wide variety of clinical trials are offered.
“When faced with cancer, patients want to know they have multiple options available to them, and this includes clinical trials,” said Dr. Sabbatini. “For example, participating in a clinical trial at a place like Memorial Sloan Kettering offers patients the opportunity to receive drugs or therapies years before they are more widely available.”
MaPS / Millward Brown Analytics conducted a national survey on behalf of MSK among 1,511 consumers, ages 18 to 69, and 594 practicing physicians who have discussed clinical trials with patients, specializing in oncology/hematology, OB / GYN, gastroenterology, urology, ear / nose / throat medicine, neurology, pulmonology, or dermatology. The survey was conducted between October 23, 2015, and November 12, 2015.
Explore further: Income affects oncology clinical trial participation
More information: For more information and resources on clinical trials, please visit www.mskcc.org/cancer-care/clinical-trials
Provided by: Memorial Sloan-Kettering Cancer Center