Information Tools for Menopausal Women Considering Hormone Therapies

Background The twenty-one million women reaching menopause in the next ten years can cope with menopause effects in a variety ofnew ways. Today, a growing body of evidence indicates that women may wish to actively participate in choosing health management strategies. Estrogen has been shown to prevent primary heart disease and osteoporosis with additional possible benefits of prevention of Alzheimer's disease, macular degeneration and colon cancer. Estrogen risks include uterine cancer, if adequate progesterone is not given, possible increased risk of breast cancer with long term use, and increased risk of venous thrombosis. New specialized therapeutic agents which are targeted to either heart, cholesterol, or bone means that decisionmaking has become more complex for women. Potentially these women might be interested in computer based tools to help present information about current specialized hormone therapies, particularly if this information is tailored to individuals. Methodology Our preliminary studies used both focus groups and written surveys. We conducted two focus groups, one with women aged 50 or older who had not had breast cancer and one with women with a history of breast cancer. We then surveyed about 200 women attending an obstetrics and gynecology clinic with a series of questions concerning their preferred level of control in health care decisions. We used the Degner' control preferences scale in conjunction with questions about preferred decision control in cases of both medical conditions as well as managing menopause effects. A last question asked women to check off which of a list of 24 menopause topics would they like to obtain more information. Finally, we surveyed 56 women visiting our women's mid-life clinic during a period of about one month These women were given a one page form with questions about their current use of the computers and the Internet. Results. Women in the first focus group (no breast cancer) reported difficulty: accepting menopause related changes, sorting aging from menopause, and denial. They also had a desire for support. They were reluctant to take estrogen and felt physicians were forcing estrogen upon them without providing alternatives. The major concern of women in the breast cancer survivors group was breast cancer, with menopause viewed as being more difficult because of fewer effective therapies available for them. Results of the control preferences survey suggested that these women have the same level of control preferences for both medical and menopause decisions. The mean response was between sharing decisions with their health care provider (HCP) and preferring to take some control themselves. These women wish to have significantly (p < 0.001) more control than Degner' found among Canadian breast cancer survivors Of the 24 menopause related topics, three were of interest to 25 percent or more of the women. These topics are: weight gain, osteoporosis, and hormone replacement therapy. The results of the computer usage include that 77 percent of the surveyed women indicated they had access to the Internet (via web sites or through email). In fact only women seventy years or older indicated that most did not have Internet access. Conclusions The results of two focus groups included a clear difference in desire to discuss or obtain information on menopause: the breast cancer survivor group had little discussion about menopause, the group without breast cancer were quite willing to discuss menopause and consider new information. The women in our preliminary survey studies wished to have more individualized options presented to them for hormone replacement therapies. They also wanted to share or have control in health management decisions. In a separate survey on computer usage, most (77 percent) of the polled women indicated they currently use the Internet. We expect computer-based informatics tools should help these women to make choices of hormone replacement therapy tailored to their own desires and risks.