Information Gathering Over Time by Breast Cancer Patients

Abstract

BackgroundUnlike 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.ObjectiveTo identify where breast cancer patients find medical information about their illness and to track changes over time, from active treatment to survivorship status.MethodsParticipants 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.ResultsEight 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.ConclusionsPrevious 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.

The Impact of the Internet on Cancer Outcomes

“…In one study, in which different groups of persons with cancer were surveyed using the same instrument, highly significant differences in utilization of the Internet by diagnosis were observed: 16% of lung patients, 18% of head-and-neck patients, 27% of prostate patients, 34% of breast patients, and 45% of gynecologic patients reported using the Internet to obtain cancer-related information. 20 This partly reflects demographic differences between the cancer types: We know from many studies that women are more active health seekers than men, 28,29 and that younger age 7,9,10,12,14,16,20,21,24 is also associated with greater Internet use. Therefore, age and sex are confounders when comparing Internet use, and it is unclear whether differences between diagnostic groups are mainly a result of demographic differences or whether they remain significant when adjusted for patient age and sex.…”

“…In addition, well-known socioeconomic predictors for Internet use or nonuse, that is, factors contributing to the "digital divide," 30,31 also cut across the population of persons with cancer: those using the Internet are mostly better educated 6,7,14,19,21,24 and have a higher income 6,14,19 than nonusers, and they are more likely white.…”

“…Although in some studies the Internet is cited as the second most important source for cancer information after health professionals, 14,19 it may play a somewhat less important role when it comes to making important treatment decisions in cancer: When asked for the most important factor influencing their treatment decision, men with prostate cancer indicated that physician recommendation (51%), advice from friends and family (19%), and information obtained from books and journals (18%) were more often the most important source, with the Internet cited by only 7%. 15 Still, for those who use the Internet, information found there certainly influences their decisions, and patients are highly satisfied with the Internet as an information source compared with other media.…”

“…14 It is likely that the ongoing social support provided by Internet communities and the ability to keep up-to-date with recent medical news accounts for this.…”

Patient and carer perceptions of cancer care in South Australia

“…20,21 Health professionals within treatment centres are the preferred information source, with written information being a popular back-up to verbal information and advice from health care staff. 22 Written information is also a valuable source of information for family and friends who provide care outside the hospital setting. The National service improvement framework for cancer recommends the provision of both verbal and written information about clinical aspects of cancer, along with written treatment and follow-up plans.…”