The Mammography Guidelines Controversy: What Do Women Think?

ABSTRACT - Medical researchers have begun to question the appropriateness of guidelines (supported by the National Cancer Institute, American Cancer Society, and others) which recommend that women between forty and fifty obtain mammograms every one to two years. This paper reports on the early stages of a consumer research program which seeks to understand how women are responding to this controversy. The findings have implications both for dealing with the current controversy and for improving preventive health programs of all types.

Citation:

Sharyn M. Sutton, Ellen J. Eisner, Diane L. Bloom, and Paul N. Bloom (1994) ,"The Mammography Guidelines Controversy: What Do Women Think?", in NA - Advances in Consumer Research Volume 21, eds. Chris T. Allen and Deborah Roedder John, Provo, UT : Association for Consumer Research, Pages: 382-391.

Advances in Consumer Research, Volume 21, 1994      Pages 382-391

THE MAMMOGRAPHY GUIDELINES CONTROVERSY: WHAT DO WOMEN THINK?

Sharyn M. Sutton, National Cancer Institute

Ellen J. Eisner, National Cancer Institute

Diane L. Bloom, University of North Carolina

Paul N. Bloom, University of North Carolina

ABSTRACT -

Medical researchers have begun to question the appropriateness of guidelines (supported by the National Cancer Institute, American Cancer Society, and others) which recommend that women between forty and fifty obtain mammograms every one to two years. This paper reports on the early stages of a consumer research program which seeks to understand how women are responding to this controversy. The findings have implications both for dealing with the current controversy and for improving preventive health programs of all types.

INTRODUCTION

Consumer researchers have been devoting increasing attention to how they can contribute to the resolution of social problems. For example, a subject emphasized in several sessions at the 1992 ACR Conference was how consumer research can be used to improve the effectiveness of preventive health programs.

One preventive health topic that has already been the subject of considerable consumer research is: How can women be persuaded to have regular mammograms? Numerous studies have been done to identify the factors that influence decisions to have mammograms (for reviews, see AMC Cancer Research Center 1992, Rimer 1992); and a number of consumer-research-based intervention programs have been tested and evaluated (Rimer 1992).

Although progress has been made in persuading women to have mammograms, a recent development is viewed by public health officials as threatening this progress. Over the last year, many researchers have begun to question the appropriateness of the existing guidelines for mammography (supported by the National Cancer Institute, American Cancer Society, and others), which recommend that women between 40 and 50 have a mammogram every one to two years and that women over 50 have one every year. The concern is that women under 50 may not benefit from mammograms and may even be harmed by them. Indeed, one randomized clinical trial done in Canada with women between 40 and 50 showed that women who obtained regular mammograms were more likely to die of breast cancer than women who never had mammograms (Miller et al. 1992).

Concern about how women would respond to this controversy over mammograms led the Office of Cancer Communications of the National Cancer Institute to conduct several consumer research studies to generate ideas about how public health officials could best minimize any negative consequences from the controversy. Of particular concern was that women over 50 C who clearly benefit from having mammograms according to clinical trials C would become less inclined to have mammograms.

This paper reports on two focus groups that were conducted to gain an understanding of women's reactions to and thinking about the controversy. Insights from these groups were used to guide the construction of a nationally projectable quantitative survey (Sutton, Eisner, and Johnston 1993), which was completed after the deadline for this conference. Issues are raised in these studies that relate to research in areas such as how consumers respond to risk communications, how consumers react to information that is discrepant with prior knowledge and behavior, and how consumer skepticism works. However, this research was not drawn upon for specific research hypotheses to guide the research reported here because of a desire to take a fresh, exploratory approach in conducting the focus groups.

METHOD

The focus groups were conducted in January 1993 in Richmond, Virginia. Richmond was selected because it was easily accessible to the National Cancer Institute staff (located in Maryland) and because it was not as major a metropolitan area as Washington, Baltimore, or Philadelphia. The first group consisted of ten women ages 40 to 49, and the second consisted of ten women ages 50 to 65. Both groups were recruited to include a mix of individuals who were having regular mammograms and those who were not. No one in either group had ever been told they had (or might have) cancer. In terms of education, all participants had either a high school education or had attended one or two years of college. While the study contained predominantly white women, several African-American women participated. Each group was two hours in length.

The topic guide for the first part of each group followed a sequence of topics, ranging from general perceptions about breast cancer and mammography to personal behaviors with regard to obtaining mammograms. In the second half of each group, participants were asked to read and discuss a "News and Opinion" article adapted from a column published in the Chicago Tribune entitled, "Is It a Mammogram or a Mammoscam?" The article addressed a number of issues, including the current controversy about mammograms for younger women. Results of the Canadian study were also reported.

FINDINGS

Summary of General Discussion on Mammography

Women in the focus groups were concerned about a number of health-related problems, including cancer, high blood pressure, Alzheimers disease, arthritis, the general deteriorating effects of aging, and the high costs of health insurance and health care. When the term "breast cancer" came up, some participants immediately thought about other women they have known with the disease. Others thought about losing a breast or dying.

In the course of discussion, group members were asked to indicate how likely they thought they were to get breast cancer on a scale from "1" to "7," where "1" signified "not at all likely" and "7" signified "very likely." As a whole, the group of older women rated themselves as less likely to get breast cancer than did the younger women. Some said they didn't think they were likely to get it because they are healthy; others, because no one in their family had it, or because they have a positive outlook on life.

"I believe in positive thinking. I put '1' even though my grandmother and my mother had cancer."

"I've heard that 85% of all illness begins in the mind. I don't know if that's correct, but I believe it."

Although several older women thought they wouldn't get breast cancer because there was no history of it in their families, others who had a family history also seemed to feel exempt from getting the disease. One said, "I gave a '1' even though I had a sister who died of breast cancer. But I'm a healthy person. I just don't feel as if I'm going to get it."

There was a feeling among the older women of having passed a certain "window of vulnerability." Having not gotten breast cancer by the time they were in their fifties, many considered themselves to be safe at this point. As one older woman expressed it, "I [gave myself a low rating] because there isn't any history of it around [in my family] and [because] I've been tested at least 4 or 5 times since I was 40 or 45 years old, and nothing has shown up yet."

By contrast to the older group, the younger women were more likely to choose higher ratings of 4 or 5 simply because they were women and therefore knew themselves to be at risk.

The discussion of susceptibility to breast cancer quickly led to a discussion of mammography. Group members perceived the major advantages of mammograms to be finding breast cancer early while it is more easily curable, knowing whether or not one has breast cancer, and peace of mind. Major disadvantages included cost, pain and discomfort, and the fear of finding cancer.

In both groups, women expressed concern that mammography equipment might not be working properly and could, as a result, give them too much radiation. Several participants mentioned having seen a program on 20/20 about the inaccurate reading of mammograms. There was concern that the individuals who read their mammograms may err and fail to detect early cancers.

Some focus group participants indicated that they had gotten mammograms either because they had found lumps, had other problems (e.g. , bleeding) or because their doctors had recommended the test. Others had heard that women over 40 should have mammograms and agreed with that point of view.

Summary of Discussion on Mammography Guidelines Controversy

The crux of the focus group discussion centered around examining participants' reaction to the current scientific controversy over whether women in their forties should be having mammograms, given the findings of several recently published studies. As mentioned earlier, the stimulus for this discussion was a news and opinion article that appeared in the Chicago Tribune during December 1992.

As the women discussed the article, several major themes emerged. These key themes are discussed below:

1. The current controversy over mammograms for younger women is generally perceived as positive.

It is interesting to note that none of the women in the focus groups had any knowledge of the mammography age controversy before being exposed to the article. In general, the fact that there was yet another medical controversy going on did not surprise them. Women in both focus groups said they expected the experts to disagree about complex health questions.

"It seems to be the same thing over and over again. It may be necessary; it may not be necessary. It is good; it's not good. It does prove something; it doesn't prove something. And they're still arguing about it. They can't make up their mind whether statistically it's really doing any good."

"There's controversy no matter what it is, whether it's AIDS or whatever. There's always controversy."

As the discussion progressed, it quickly became apparent that this type of debate is viewed in a positive light. Women in the groups believed that disagreement among experts and cancer organizations will prompt more studies on important questions. The following statements and dialogue illustrate participants' view that conflicting ideas are constructive and that disagreement ultimately results in greater truth and certainty:

"I think it's a kind of checks and balance system. Suppose I have my opinion and I think this is the only opinion in town. But then you come along and you've had experiences I wasn't exposed to. To me, when they disagree, it means that someone is trying to improve."

"I think many different organizations are working independently, trying to get information. That's what I like. There are a lot of people gathering information....I see value in it for getting an unbiased opinion."

Controversy was also viewed as positive because it generates media attention. Newspaper and magazine articles remind them to have mammograms, whereas they might not otherwise think about it.

2. Participants are indoctrinated with the concept of early detection.

In both focus groups, the women firmly believed that mammograms detect breast cancer early when it is most curable. Early detection, they said, was the key to survival, as well as to less radical surgical treatment. Even after reading the article, almost all the women said they would continue getting mammograms.

"This is the thing to do. We've heard it for 10, 15, 20 years now, that we should have mammograms. And that's what we do, most of us."

"I do believe there's still something to mammograms....Maybe it has some merit still, even if they can't agree on it. There's got to be some merit to it because they are detecting [breast cancer] and they are saving some people."

3. Women give credence only to the information that confirms their prior beliefs; they disregard conflicting information.

Upon first reading the article, some participants (particularly in the younger focus group) were taken aback by the statement that although mammograms detected more small breast tumors earlier in women in the mammography group, these women did not live longer than individuals in the other group. "Confused," "angry," "scared,""makes you wonder," "makes you feel insecure" were some of the initial reactions to the article. The following comment was typical:

"It doesn't make me feel good. It upsets me. Maybe I've been wasting my time. Here I'm being exposed to low radiation for nothing. I could be giving myself breast cancer. Maybe I have this lump from the last mammogram. Who knows?"

Within a few minutes, however, they were all engaged in "selective distortion," accepting only information consistent with the belief that mammograms save lives. Information which conflicted with their early detection mindset C namely, that more women in the 40-49 age group who had mammograms died of breast cancer than those who didn't have mammograms C was largely disregarded.

Participants used a number of different mechanisms to discount parts of the article that did not fit their prior beliefs. Some participants tried to discredit the Canadian and Swedish studies based on their very limited (and often incorrect) knowledge of research methodology. They questioned, for example, the size and composition of the samples studied. They also wondered what other factors regarding the study participants might have caused more of them who had mammograms to die from breast cancer.

"I wonder who paid for that independent study. With independent studies they may interview 1,000 women, but what's 1,000 women when you consider how many millions of women there are? I heard one the other day about a survey of children. I was listening to it and I thought, 'I don't agree with that.' This was a survey of [only] 39 children."

"What kind of women were they? Were they different races? Certain groups might be more susceptible to certain diseases than others. They didn't even bring that up in the article. It says Swedish and Canadian."

Some women discredited the article in and of itself ("It says News and Opinion not News and Gospel!"), while others simply quoted the article selectively.

4. Participants were skeptical about research study findings in general, and foreign studies in particular.

As a whole, participants were not swayed by the research findings reported in the article. Instead, as indicated above, they questioned how the study was conducted (e.g. , how many women were in it) as well as other variables that might have affected the results. Participants were particularly skeptical about foreign studies, feeling that women in other countries may be exposed to different environmental factors than American women, thus making them more susceptible to cancer. Likewise, they felt that women from different cultures may have a greater predisposition toward certain diseases such as breast cancer. The following verbatim illustrates participants' unwillingness to accept study results at face value:

"In so many of these studies, they don't tell you where they [the participants] live, what they do, what their family background is. What kind of study? Where does this come from?"

In both groups, women expressed a desire for additional information regarding how the studies were performed and who the participants were. They wondered, for example, whether the women who got breast cancer were in a higher risk group to begin with, or could have been exposed to any contributing environmental factors. They also speculated on the possibility that some of the women who died of breast cancer had been on birth control pills, while the women who did not get the disease were not.

Overall, it was clear from the discussion that participants did not understand the concept of randomized clinical trials. Members of the focus groups tended to think that differences between the study and control groups were attributable to individual differences, making some women more likely to develop breast cancer than others. Several women said they would like to read the original journal articles, even though they acknowledged the difficulty of understanding such material.

Participants were also wary of research because they believe that research on the same question can generate different answers. The Canadian study is just one study, they said, and they wonder what future studies will reveal. In the absence of more complete and convincing information on the relationship between having mammograms and survival rates for younger women, participants said they are unlikely to change either their behavior or their perceptions regarding mammograms. As one woman put it, "The jury is still out."

5. Participants think that statistics can be manipulated to support any viewpoint.

Also contributing to the skepticism about medical research was the belief that statistics can be used to support any point of view. Conclusions based on statistics were generally not convincing to focus group participants, as the following comment indicates:

"I feel like now it's become a game of statistics. You can go back and interpret statistics anyway you want to. You can make the numbers work from any angle you want to and they always come out different. Statistics...depend on what point of view the person that's compiling them is trying to come up with. So I have no faith in statistics."

6. Participants think that women in their forties should have more mammograms rather than fewer.

Women in both groups wrestled with the copy point in the article which stated that mammograms would not help women in their forties survive breast cancer. Early detection, they reasoned, should lead to better chances of a cure. The fact that the Canadian study showed that more younger women who had mammograms died from breast cancer than women who did not have mammograms was confusing to them.

In trying to make sense of it, a few participants had brief flashes of fear that the radiation from mammograms might be responsible for the negative outcome in younger women. This fear, however, quickly gave way to another hypothesis, based partly on a sentence from the article stating that breast cancer grows faster in younger women. Participants reasoned that if this is the case, women in their forties need to have more, not fewer, mammograms. If breast cancer starts between mammograms, by the time the next mammogram is scheduled two years later, the cancer could grow dangerously out of control. One woman explained it this way:

"Cancer grows very rapidly in a young person. But in an older person, it grows very slowly. As everyone was saying, I think it's backwards. When you're 40 you should have one every 6 months. When you get to be 50, you can have that lump in your body for a year or two and it would not grow that rapidly."

"To me it's disturbing, the fact that all these women are dying from breast cancer between 40 and 49. Maybe they should start mammograms at age 35 and catch it in time. Evidently, it hasn't been caught in time if they're dying from it. It wasn't early enough detection."

To participants, the need to monitor women in this younger age group more closely seemed logical because their bodies are going through vast hormonal changes C changes which could increase the chances of their developing other health problems. In the older focus group, participants mentioned that women in their forties may not be examined as frequently by a physician after their childbearing years, causing early stages of breast cancer to go undetected. One woman put it this way:

"They'd better get on the stick and start examining these girls even closer than before because that's where the body change comes in...I think that is the time of your life that you pay the least attention to yourself because you're getting the kids in and out of college and in and out of marriage. You're getting them in and out of everything. We've all been through it. It's too busy."

Women in the older group also thought that women in their thirties and forties may be more at risk for breast cancer because they have been exposed to so much more in the way of pollutants, contaminants, and chemicals (e.g. , in food) during their lives than women in their fifties. There was discussion, for example, about whether long-term usage of birth control pills could be making women who are now in their forties more susceptible to breast cancer. This seemed logical to participants, since there is some evidence of a linkage between estrogen replacement therapy and breast cancer, and estrogen is also the main ingredient in birth control pills. Overall, there was consensus in the older group that younger women need to have mammograms more frequently.

7. The fact that mammograms are not 100% accurate does not disillusion women.

While none of the focus group participants were aware of the guidelines controversy before reading the article, a number of individuals recalled having heard or read something in the news about the accuracy of mammograms. When the subject of accuracy came up, women in both groups noted that they were not surprised to hear that mammograms are not always accurate. They did not expect medical tests to be completely reliable since "nothing is 100% foolproof and "no tests are completely accurate." They were impressed, in fact, that mammograms were accurate most of the time, as the following comment illustrates:

"I used to trust fully that mammograms were going to find breast cancer, and I was just floored when I found out [they weren't completely accurate]... I was going through it like this is God saying I'm O.K. After I got myself psyched up, I come to find out maybe it's 89% accurate. But it's better than not doing it."

Many participants also said that women should do breast self-examinations to increase the likelihood of detecting cancer early.

8. The motives of mammography equipment owners and doctors are questioned.

A sub-theme in both groups was lack of trust in the motivations of mammography equipment owners as well as doctors who recommend mammograms or have their own equipment. Some participants wondered whether mammography facilities try to convince women to have mammograms because these tests are necessary and beneficial, or because the facilities need to use the equipment to make money. Analogies were made to heart bypass operations and MRI tests.

"I read that where it's available it seems like there are a great number of by-pass operations, and where it's not available, nobody needs one."

"I've read that doctors recommend tests to support the equipment they have. I read that so many hospitals in a particular area had MRI machines that they couldn't support it, so doctors were pushing these tests."

Although a number of women had stated during the first part of the focus groups that they trust their doctor's advice on tests, some participants also thought that their physicians recommend mammograms to protect themselves from malpractice suits. The following comment was typical:

"I think a lot of tests are recommended or sold just so the doctor can say, 'Well, I did everything; I did the best I could.' It doesn't really mean that you had it because you need it or you fall into a risk group, it's just so the doctor can say, 'I'm free and clear.' He's protecting himself against malpractice."

9. A change in guidelines would not hurt the credibility of the organizations involved.

As a whole, participants did not regard a potential change in the mammography guidelines as a major event. Focus group participants believed that physicians' groups and organizations responsible for setting guidelines already meet periodically to review new literature and evaluate current recommendations. They view this reevaluation as constructive and positive, calling it a "safety check." Moreover, they feel reassured that these organizations will "put all their ideas together, research it, and come out with an answer." Some said that the National Cancer Institute and the American Cancer Society have to "pay attention to the new studies because it's contradicting some of their beliefs" and "they have to go back and substantiate their opinion."

It made sense to participants that as the science evolves, experts might need to change the guidelines. Consideration of such a change, however, would not cause the major cancer organizations to lose credibility in these women's eyes.

10. A change in the guidelines would not change participants' behavior with regard to having mammograms; the choice of whether (or when) to have a mammogram is a personal decision.

In terms of how a change might affect them personally, all the younger women said they would continue having mammograms in their forties even if the official recommendations were changed. No one said they would follow the recommendations just because they were "official." They described the guidelines as "a jump-start" to get them thinking about whether or not to have a mammogram. Overall, they felt that the guidelines should either remain the same or be made even more protective for women in their forties. One younger woman echoed the thoughts of others in her age group when she said:

"I would go and have one as soon as I can, even if they decided to change the recommendations. I would go either way. I wouldn't wait until I was 50 to have a mammogram because I think that there's enough breast cancer that's been found in that 40 to 49 group for me that I consider early detection to be worthwhile."

Responding in a similar way, women in the older group said that a revision in the mammography recommendations would not affect their own behavior regarding mammograms because having this test was just "the right thing to do."

Women regarded the choice about how often to have a mammogram as a personal one, to be made after considering the available information. As the women put it:

"Statistics are great when reading an article like this, but it has to come down to your individual perception of things. And you and your doctor have to decide whether this is what you want or not. If it gives you peace of mind, then you do it. If you think it's a waste of time, then you don't do it."

"You know, there's an old saying: 'There are two sides to every story, and then there's the truth. And unfortunately, we never know the truth. I believe the truth is within ourselves."

It should be noted, however, that some younger group members expressed concern that mammograms for their age group would no longer be covered by insurance if the experts ended up changing the guidelines to exclude younger women. Perceiving this as a possibility, some thought that changing the guidelines to exclude women in their forties would be "insensitive" on the part of NCI, since it would leave women paying for mammograms out of their own pocket.

DISCUSSION AND CONCLUSION

As is the case with all focus group studies, the findings from these groups must be interpreted cautiously. Studies in different cities using more diverse subjects and employing alternative stimulus materials (rather than a news story) could clearly produce different results. Nevertheless, the findings do provide several ideas and insights that could be useful for guiding future research on (1) how to design more effective preventive health programs and (2) how to how to handle the current mammography guidelines controversy.

The findings suggest that designers of preventive health programs need to recognize the extreme complexity and unpredictability of consumer decision making about preventive health. Clearly, persuading someone to take a preventive health action involves much more than making them understand their risk of contracting a disease. Many factors seem to influence decisions about behaviors like obtaining a mammogram, including factors like perceptions of the risks associated with screening tests or treatments, concerns about insurance coverage, and negative feelings about doctors. Preventive health programs could benefit from additional consumer research on several of the issues identified in these focus groups, such as:

! Which information sources (e.g., mass media, friends, doctors, government agencies) do individual consumers rely on and trust the most to guide their preventive health behaviors? Is information source reliance related to age, education, ethnic background, health history, and/or other factors?

! How does distrust of health care providers and insurers influence behavior? How can this distrust be reduced?

! How do consumers process information about scientific research on preventive health? How do prior beliefs and habits distort the processing of new information about preventive health behaviors? How do consumers respond to descriptions of research designs and reports of statistical results? How can research findings be presented to consumers so that they understand them accurately?

! What role does "positive thinking" play in leading some consumers to underestimate certain health risks?

! Do consumers overestimate the health risks of preventive health behaviors (e.g., the risk of radiation from mammograms) or treatment (e.g., chemotherapy) relative to the health risks of diseases? How can more accurate risk perceptions be created?

Work that consumer researchers have done on information processing, decision making, perceived risk, and several other topics would seem to have relevance for addressing these issues.

Without additional research, it is premature to offer a recommendation about what should be done about the current mammography guidelines controversy. However, if future research produces similar findings, it would suggest that the guidelines controversy will not have a dramatic impact on the frequency with which women obtain mammograms. The development of strategies to minimize the effects of the controversy may not be necessary.

REFERENCES

AMC Cancer Research Center (1992), Breast and Cervical Screening: Barriers and Use Among Specific Populations, Denver, CO: AMC Cancer Research Center.

Miller, Anthony B., Cornelia J. Baines, Teresa To, and Claus Wall (1992), "Canadian National Breast Screening Study," Canadian Medical Association Journal, 147(10), 1459-1476.

Rimer, Barbara K. (1992), "Understanding the Acceptance of Mammography by Women," Annals of Behavioral Medicine, 14(3), 197-203.

Sutton, Sharyn M., Ellen J. Eisner, and Cecile M. Johnson (1993), "The Mammography Guidelines Controversy," Where Does the Consumer Fit In?" working paper, National Cancer Institute, Bethesda, MD.

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