Information Gathering Over Time by Breast Cancer Patients

Background: Unlike many patients of the past, today's health-care users want to become more informed about their illnesses, and they want the most current information. The Internet has become a popular way to access current information, and since its introduction more people are turning to it to find medical information. Studies report that anywhere from 36% to 55% of the American population that use the Internet is using the Internet to research medical information, and these percentages have been rising. Cancer is 1 of the top 2 diseases about which people seek information on the Internet. Some studies have specifically asked whether breast cancer patients access the Internet for medical information; estimates range from 10% to 43% of breast cancer patients who use the Internet, with higher usage being associated with more education, greater income, and younger age. Objective: To identify where breast cancer patients find medical information about their illness and to track changes over time, from active treatment to survivorship status. Methods: Participants were 224 women who had been recently diagnosed with Stage I, Stage II, or Stage III breast cancer. Each woman was contacted approximately 8 months and 16 months after diagnosis and was asked about 10 different information sources they could have used to obtain information or support about their breast cancer. Results: Eight months after diagnosis, the top 3 information sources used by women were books (64%), the Internet (49%), and videos (41%). However, at follow-up (16 months after diagnosis), the most frequently cited information source was the Internet (40%), followed by books (33%), and the American Cancer Society (17%). We found that women continued to use the Internet as a means of gathering information even after their treatment ended. Significant unique predictors of Internet use were more years of formal education and younger ages. Cancer stage was not a significant predictor of Internet use. Conclusions: Previous research has been mixed about the percentage of cancer patients who use the Internet to gather information about their illnesses. The results of the present study corroborate 2 other data sets of breast cancer patients, as just over 44% of the women reported using the Internet after diagnosis. Sixteen months after diagnosis, the percentage of women using the Internet dropped slightly, but other chief sources dropped sharply at that time. The Internet continues to play an important role for cancer survivors after medical treatment has ended, and health professionals can use this knowledge to provide their patients with Internet advice.