Background: There is limited information available regarding the characteristics of patients who elect to gather and share information about their malignancy on the Internet.
Methods: Using a proprietary decision support program embedded into a number of established websites, individuals entered personal clinical data into disease site profilers designed to provide information about evidence-based treatment options, based on specific characteristics(e.g., stage of disease, prior therapy) provided by the patients. The aggregate data were evaluated to examine the characteristics of patients with gynecological cancer (with a focus on newly diagnosed and recurrent ovarian cancer) using such a tool.
Results: From early 2000 through November 2004, >15,000 patients with gynecological cancer have entered data into one of four profilers: newly diagnosed (n = 5604)/recurrent (n = 2803) ovarian, endometrial, and cervical cancers. Internal data consistency includes similar ages and general health histories of the ovarian and endometrial cancer populations and younger age of the cervical cancer patients. Whereas 90% of the women with ovarian cancer considered themselves to be in "good health," 64% of newly diagnosed vs. only 50% of recurrent disease patients declared their activity level was "normal." Of the recurrent patients, 32% stated they had undergone a secondary surgery. The overall aggressive management philosophy of the recurrent patients in this series is supported by the observation that 33% had received ≥4 prior chemotherapy regimens, 97% desired additional treatment, and 81% were interested in clinical trials.
Conclusions: Women with ovarian cancer seeking assistance from web-based decision support programs may represent a subgroup with unique clinical features compared with the general patient population.
