Information disseminated via the World Wide Web on cancer clinical trials is difficult to access and incomplete, effectively limiting participation in a process that already faces recruitment challenges. Those findings come from a study to be published in the journal Cancer.
Cancer clinical trials can be an important treatment option for cancer patients. They represent almost three quarters of ongoing trials at any given time. They may offer participants access to treatment that is not otherwise available, more careful monitoring of their condition and possible side effects of the treatment, and the chance to help others who may have the same condition in the future.
However, patient participation in cancer trials is woefully low, with fewer than 5 percent of cancer patients enrolling in them. Low participation rates delay treatment development and may eventually impact survival rates. Obstacles to patient participation include misperceptions about insurance coverage of experimental treatments, questions about clinical trial design and conduct, and potential benefits for individual patients. However, various state programs are now available to minimize the economic barriers to clinical trial enrollment. The Web provides a potential public platform to disseminate information about clinical trials and their risks and benefits.
To investigate the availability of clinical trial and insurance-related information on the Web, Dr. Andrew Kelahan of KDB Consulting & Management Services in Philadelphia reviewed 373 Web sites, including 318 research institutes, 23 professional and research organizations, and 32 patient advocacy groups. The reviewer assessed each site for accessibility and scored according to six questions addressing Web site content, trials currently open for enrollment, and health plan coverage.
Only 11 (3 percent) of the 373 Web sites provided enough information to completely answer all study questions. In general, professional organizations were able to address more questions than patient advocacy groups, and both provided more complete information than research institutes. Among the most complete Web sites from each category included the Cancer Institute of New Jersey and its partner NJ Cancer Trial Connect (www.cinj.org and www.njctc.org, respectively), the American Cancer Society (www.cancer.org), the National Ovarian Cancer Coalition (www.ovarian.org), and the Coalition of National Cancer Cooperative Groups (www.cancertrialshelp.org).
Kelahan concludes, "Only 3 percent of the reviewed sites provided enough information to potentially overcome the most important barriers to patients participation - lack of awareness about clinical trial availability, benefits and health benefit coverage - and fully inform a visitor about the clinical trial option."
SOURCE:
Cancer, March 15, 2004; published online February 9, 2004