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Internet Use Builds Cancer Patients’ Confidence

By Jacqueline Strax

Newly diagnosed cancer patients who use the Internet to gather information about their disease have a more positive outlook and are more active participants in their treatment, according to a new Temple University study published in the March 2006 issue of the Journal of Health Communication.

March 15, 2006. Cancer patients who go on line themselves or whose family members or friends help them to get information from the Internet are more likely than non users to say that they have a "partnership" with their physician, says principal investigator and public health professor Sarah Bass, Ph.D.

"This indicates that retrieving Internet health information might influence patients' feelings about their knowledge of disease," Bass and her co-authors write, "making them perceive themselves as more able to enter into a partnership with their physicians than those who are less informed."

"As patient advocacy groups have suggested," the authors say, "providing patients with access to medical information is empowering -- if so, it is reasonable to expect that using the Internet to find information will have some type of impact on these patients' relationships with their doctors."

"This is the first study to look at the relationship between Internet use and patient behaviors," Bass said.

The team at Temple University recruited patients who called a National Cancer Institute-funded 1-800 number, where trained specialists answer questions about the disease and direct callers to cancer-related resources in their area. Once selected, the 442 study participants were broken into "direct user, indirect user and non user" categories based on their Internet usage patterns.

Participants were asked: “Thinking about the past year, would you characterize yourself as someone who has never looked up health information on the Internet (Nonuser), has received Internet health information from a friend or family member but has not looked up the information yourself (Indirect user), or, has looked up health information on the Internet (Direct User)?

Almost all the people in this study were white (91.3%), and more than half were between the ages of 51 and 70 years old (54.3%) and had completed high school or college (51.7%). Most were residents of the three states served by the Atlantic Region CIS (Pennsylvania, New Jersey and Delaware).

The cancers these people inquired about involved the following primary sites: prostate (30.4%), breast (22.4%), lung (5.9%) leukemia or other blood cancers (4.3%), lymphoma (6.6%), ovarian or other female reproductive organs (6.6%), colorectal (2.9%), stomach or intestinal track (.9%), and other sites, most commonly melanomas and skin cancers (20.0%).

Focusing in on those in this group who had used the Internet directly or had received information from it indirectly from a friend or family member, the study found that they were more likely to be female, between the ages of 50 and 60, employed, college graduates, with income of over $60,000 a year.

About 1 out of 5 people who said they had never used the Internet for health information switched to using it within a few weeks. The main reason given for doing so was "My diagnosis and wanting to know more about my disease." Another common reason was "family and friends urged them to find information." Some people (22.9%) reported that they "just never got health information before now."

In response to yes/no questions, more than 1 out of 4 of those who switched said they did so because of their diagnosis (82.1%), and/or because they had questions about treatment options (87.2%) and/or friends or family members offered to look information up for them.

Hardly anyone said that their doctor (5%) or other health care worker (15%) encouraged them to look up Internet health information.

During the survey, Bass and her colleagues began to see strong parallels between Internet use and the patients' feelings about their treatment. Those who used the Internet and those who received Internet information from family members or friends were more likely to view their relationship with their doctors as a partnership, and were more comfortable asking questions and picking and choosing among treatment options.

They were more likely to make a list of questions to ask the doctor and they asked many more questions than patients who went into the doctor's office without any information from the Internet. Half of the Internet users said that they asked six or more questions (the highest level on the survey form).

Internet users were more likely also to get their questions answered. At the same time, they were more independent about what medical advice to follow.

They also shared more of what the study authors call "feelings of concern." By actively seeking out information on the Internet, Bass and her colleagues say, it is as though these cancer patients prepared themselves to open a dialogue with their doctors and to act effectively on their own behalf to problem-solve the "task" of surviving cancer.

"These results suggest that use of Internet health information is related to patient question asking behavior in a significant way." the study authors write. "Having access to a large amount of information could be viewed as an impetus to ask questions about treatments and recommendations, not relying only on the provider to supply medical information."

"Direct Users were more likely to say that they had carried out only some recommendations or did not carry out the recommendations at all, compared to Indirect and NonUsers," the study found.

"They saw the Internet as a powerful tool that enhanced their decision-making ability," Bass said.

Moreover, Bass and her team were pleasantly surprised by the number of early non-users who after eight weeks turned to the Internet for information. When asked about the change, approximately 75 percent said that either family/friend encouragement or the cancer diagnosis itself prompted them to increase their Internet use.

"They didn'tt want to feel powerless or have to rely on the doctor to make all of the decisions," Bass said.

Cancer patients who use the Internet, directly or indirectly, increase their "self-efficacy," the authors conclude -- and this may be important for their health. "Self-efficacy studies done with cancer patients have shown that increasing feelings of self-efficacy have been positively related not only to behaviors such as screening and preventative behaviors but also to survival, psychosocial adjustment, and general quality of life."

A question this study does not answer fully is why some people are jolted by a cancer diagnosis into getting information from the Internet while some others, even if equally well-educated, do not. Age was identified as one factor, with older patients less likely to log on. The authors wonder, though, "if there are inherent personality differences between people" that make them some more assertive about gathering information from the web.

In this study, cancer patients who did not obtain information from the Internet showed lower levels of assertiveness in the doctor's' office. Does using the Internet teach patients "task behavior" and "self-efficacy" or require these traits? Low scores on those traits, the authors say:

might be explained by a number of personality or emotional responses, including they trust that the medical profession will appropriately care for them, they trust that a higher power is determining their fate, they are in denial about the seriousness of their situation, they rely on others to help them emotionally through their illness, and do not feel the need for 'information seeking,' or these personality characteristics lead them to be more satisfied with having less information and to rely on emotional buffers to help them get through their illness.

In any case, the authors say, this study is limited by "selection bias":

While all subjects could be defined as information seekers due to the manner in which they were recruited, there are also biases in the demographic characteristics of the sample. The sample is almost entirely composed of white, middleclass individuals. Such persons have been shown in other studies to exhibit higher health self-efficacy and not to feel isolated from the health care system and its providers.

Bass warns that as more and more funding is cut for medical phone hotlines, now is the time for doctors and health workers to encourage patients to do their own research on the Web. "But as with most things, let the buyer beware. Stick to Web sites that are associated with large, well-recognized non-profit groups, or get recommendations from your physician."

The complete 33 page study can be downloaded in a .pdf file from:
http://www.temple.edu/news_media/documents/study_article_Bass_3.pdf

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This page edited by J. Strax, last updated March 15, 2006

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