Women generally unaware of landmark hormone therapy study

Despite the huge publicity generated by a 2002 study on the potential dangers of hormone therapy for postmenopausal women, new research from the Stanford University School of Medicine found that only 29 percent of women surveyed knew about the study two years later.

Additionally, the women were able to correctly identify the possible benefits and risks linked to hormone therapy just 40 percent of the time.

Senior author Randall Stafford, MD, PhD, associate professor of medicine at the Stanford Prevention Research Center, said the new study points out that the medical profession hasn't yet figured out an effective way of communicating crucial health information to patients.

"This study suggests that we have a flawed mechanism for getting information down to the level of the population," Stafford said. "Although we looked specifically at menopause and hormone therapy, the findings have consequences for many other medical issues."

Stafford's results are published in the September/October issue of the journal Menopause.

Few research studies have had the impact on public health recommendations as the 2002 results reported by the federally funded Women's Health Initiative, the longest-ever examination of the health of postmenopausal women. One part of WHI focused on hormone therapy, which is used to ease the symptoms of menopause. Hormone therapy also had been widely prescribed for preventive purposes, based partly on earlier observational studies suggesting that it helped protect women against heart disease, weak bones and dementia.

But in July 2002, the WHI abruptly halted the arm of the study dealing with the combination of estrogen and progestin therapy after initial data showed women taking the hormones were experiencing higher rates of breast cancer, heart attack, stroke and blood clots than those taking placebos. In April 2004, the WHI halted the portion of the study for estrogen-only therapy, finding that the hormone did not offer any benefit in terms of heart disease prevention while increasing the risk of stroke and blood clots.

The WHI findings were the subject of unprecedented media coverage and triggered enormous changes in the use of hormone therapy. Hormone therapy prescriptions dropped 38 percent in the year following the 2002 estrogen-progestin findings, according to Stafford's previous research, with more recent data suggesting continued declines in hormone therapy use.

Although WHI changed the prescribing patterns of physicians, Stafford wanted to find out how well the findings stuck in the minds of U.S. women. To determine this, he and his team conducted a nationally representative survey of 781 women between the ages of 40 and 60 in June 2004 - two years after the estrogen-progestin results were announced, and two months after the estrogen-only findings. The respondents included 252 premenopausal women, 88 perimenopausal women (having irregular menstrual cycles, but at least one period in the past 12 months), 227 postmenopausal women (having no period in at least 12 months) and 196 women who had undergone a hysterectomy, thereby inducing menopause.

One of the survey questions was, "Have you heard or read anything about the results of the Women's Health Initiative, a major research study in the U.S. suggesting the health risks of taking hormone therapy outweigh the benefits for most women"" Stafford found that only 29 percent of the women knew about WHI, and that the level of awareness was lowest among younger women, African-American women and those with less education.

The survey then asked what the women knew about specific risks and benefits associated with hormone therapy. Only 40 percent of the women answered more questions correctly than incorrectly. For example, 64 percent knew that hormones increased the risk of breast cancer, but just 9 percent knew the medication increased the risk for memory loss and 34 percent knew that it increased the risk for heart disease. The study did not penalize women for responses that reflected scientific uncertainty about the risks and benefits of hormone therapy.

Stafford said the low level of knowledge about the WHI and the effects of hormone therapy may reflect that people don't always heed medical news unless it relates to their current medical problems. He speculated that some of the surveyed women weren't experiencing menopausal symptoms at the time of the 2002 announcement and may not have paid attention to the news. Additionally, he found that women who lived in large households knew less about WHI and hormone therapy than women who lived alone, indicating that these women may have put the health needs of their spouses and children ahead of their own.

The women were also asked whether they had discussed hormone therapy with their physicians; Stafford found that 36 percent of the women who were aware of the WHI findings talked to their doctors about it compared with 15 percent of those who weren't aware of the findings. "The most likely way for this kind of information to be retained is through discussions with physicians, and for many women it appears that those discussions never took place," he said.

Stafford said his study is indicative of a larger problem - namely, ensuring that people can make informed decisions about their medical care. "It's a particularly relevant issue because of the increasing burden of chronic disease. Right now, we're not successful in educating the population about health issues that will become increasingly common and increasingly complex in the future," he said.