Study Questions Use of Some Internet Sites by Prostate Cancer Patients (2001)

BETHESDA, MD—Cancer patients are increasingly researching their own illness, but such self-education could be counterproductive or even dangerous, according to a new study of prostate cancer patients presented at a urologic oncology conference here. The conference, the first of its kind, was held on the grounds of the National Institutes of Health and sponsored jointly by the National Cancer Institute and the Society of Urologic Oncology. The meeting's purpose was to encourage more interface between practicing urologists and the research community. Researchers in the Division of Urology at the University of Western Ontario analyzed 312 questionnaires filled out by men with prostate cancer. Of these, 91 patients had used the Internet to obtain information about prostate cancer, with 53 doing so after their diagnosis but before deciding on their treatment. Twenty-eight patients stated that the information they had found on the Internet influenced their decision about what therapy to have. However, most patients in this study could not recall the exact Web sites they had visited—except for the sites of some well-known institutions. “I had one patient, about 65 years old, who came in with a printout on herbs and shark cartilage; the printout didn't even address standard therapy,” said lead researcher Stephen Pautler, MD, who is now a medical staff fellow in NCI's Urologic Oncology Branch in the Division of Clinical Services. In an interview, Dr. Pautler said he was led to do the study because when he searched the literature, he could find almost nothing on patient use of the Internet for health information—only studies on use of the Internet by professionals. “Little has been published about patient use of the Internet in investigating their health conditions, specifically prostate cancer,” he and his colleagues concluded. In this study, patients were more likely to use the Internet for health information if they were younger, had a higher education level, owned a personal computer, and had prior experience with computers. Some 48 percent of patients in the study were between the ages of 60 and 69, and nearly half had used a computer. Of the Internet-using patients, 43 percent had expressed “a level of concern” about the accuracy of the information they were receiving from Web sites, said Dr. Pautler. However, he noted that it was often difficult for the cancer patients to evaluate the quality of the information or its source—as evidenced by the fact that many could not even remember what sites they had visited. “What can we do as doctors to address these issues?,” Dr. Pautler asked. It is vitally important for survival that cancer patients get accurate, unbiased information rather than relying on anecdotal or industry Web sites, he noted. For starters, he recommended that physicians have computer terminals for patient use in their waiting rooms, with credible sources of Internet information bookmarked. Recommendations After analyzing the prostate cancer patients' responses in this study, Dr. Pautler and his colleagues concluded that “as urologists we should participate in the development of Web sites directed toward shared decision-making.” They urged their colleagues to consider the following recommendations: ▪National bodies or international societies such as the American Urological Association, the Societe Internationale d'Urologie, the European Urological Association, and the Canadian Urological Association, should come up with their list of “approved/endorsed” Web sites for consumer education. ▪Guidelines on how to set up an accurate, reliable, balanced, and responsible Web page should be drawn up, similar to formulating any clinical practice guideline. ▪Physicians must acquaint themselves with a list of good Web sites and be ready to provide such a list for their Internet-using patients who may want further information or a second opinion. ▪Each institution or urology department should have its own Web site and provide generic as well as locally pertinent information. The content should be subjected to regular, rigorous in-house review in terms of accuracy and timeliness of information. ▪Ideally, the medical community should have an auditing mechanism to ensure the reliability and accuracy of medical Web sites and provide some degree of quality control—even if there are logistical and legal difficulties with this approach. Use of the Internet by prostate cancer patients—most of whom are older—is likely to escalate, as it is for all cancer patients. At the recent annual scientific meeting of the Gerontological Society of America in Washington, DC, symposium speaker Roger W. Morrell, PhD, said that older adults are “flocking to the Internet,” and added, “It is a myth that older adults are afraid of technological innovations.” Dr. Morrell is Director of Research at GeroTech in Reston, VA, a firm that specializes in designing Web sites for seniors; Assistant Director of Technology and Interface for the Practical Memory Institute in Silver Spring, MD; and a consultant to NIH's National Institute on Aging (NIA) and the National Library of Medicine. When Dr. Morrell recently conducted an NIA-funded study of 550 middle-aged and older adults, he found that people primarily wanted to use the Internet to research health information, as well as use it for e-mail and travel information. Cancer, heart problems, and foot problems were at the top of the health list for seniors, he said. Predictably, when older people used the Internet for health information, they looked up their own condition first. “They want to see if what their doctor said is correct,” he said. Such second-guessing could be problematic if a Web site is not credible, as Dr. Pautler found with the prostate cancer patient who brought in a printout with no standard therapies. Dr. Morrell urged anyone preparing a health Web site for older users to consider the design as well as the accuracy of the content. “Most Web sites are not senior-friendly,” he said. “The visuals are distracting or hard to read, and the site is hard to navigate.” He recommended that health Web sites for seniors use larger print; have shorter pages; have very simple directions; put medium- or bold-face type against light backgrounds; and avoid putting blue and green together, which are harder for older eyes to differentiate.