Cancer Patients Seeking More Information

In a study published in the Journal of Clinical Oncology, a team of Canadian researchers has found that the vast majority of cancer patients are seeking medical information from the Internet and news media in addition to that provided by their physician.

Dr. Lillian Siu of the University of Toronto and colleagues surveyed 191 cancer patients and 410 oncologists. More than half (54 percent) of the patients said they wanted more medical information than what was being provided by their physician; 71 percent had gone out and searched for additional medical information on their own. However, 83 percent of the patients still considered their physician to be their primary source of medical information.

The physicians were cautious about the quality of this outside information. Sixty percent thought that the media was only "sometimes" accurate; 25 percent thought the media was "rarely" accurate. Furthermore, 90 percent of the oncologists felt that it would be difficult for their patients to understand and correctly apply the information to their own medical circumstances.

Thirty-eight percent of the oncologists were nonetheless supportive of their patients seeking outside medical information, while 45 percent were "neutral." Only 16 percent reported that they were "mildly irritated" about their patients' information searches.

Overall, Siu's team found that 63 percent of the patients and 86 percent of the doctors did not feel that a patient's proactive search for outside information damaged the doctor-patient relationship.

"Information searching is common among cancer patients [but] does not affect the doctor-patient relationship," they wrote. But they warned that while the media and the Internet have become powerful means of disseminating medical information, the quality of this information is often lacking or inconsistent.

"Strategic efforts are needed to improve the quality of medical news reporting by the media," they urged, "and to provide guidance for patients to understand their disease and interpret such information better."

Additional information about the Johns Hopkins experience: Lillie Shockney, Director of Education and Outreach at the Johns Hopkins Breast Center and a 9 year breast cancer survivor had the following to say: "We have been conducting patient satisfaction surveys with our breast cancer patients for more than seven years. The survey includes all aspects of breast cancer treatment and is very thorough. (It is available online to complete as well as the results online to review.) We have found a direct coorelation between the amount of patient education information we provide patients and their satisfaction with their overall care. Empowering women so that they can directly participate in the decision making about their care and treatment should always be part of routine oncologic care and treatment for women battling breast cancer."

SOURCE:
Journal of Clinical Oncology, December 1, 2001; 19:4291-4297

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