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2004 Minority Women's Health Summit - Women of Color, Taking Action for a Healthier Life: Progress, Partnerships and Possibilities

BARBARA YAWN: While we have the technology support person, I can do the first part without the slides. In addition to the introduction that was so kindly given in the first place, I wanted to explain another little piece of why I think that I may be here. You've heard about many minority groups of women. There's another minority group of women that I represent, and those are rural women, women who don't live in some of the areas where a lot of the research studies get done. They don't have access to some of the care, and most of the research that I do is rural health research. I'm also a family physician researcher, and there's about five or six of us around the country that are women. There are a few more that are men. But we do research out in practice, we do it in practice-based research networks, and we work with you where you go get your primary care. It's called "translational research," but I think it's extremely important because what we try to do is take the kind of research that NIH in the past has paid for and randomize control trials based in academic medical centers, and we try to translate that into information that can be used in your community with the clinicians and the community members that you have available to you and with the resources you have available to you, which usually isn't all the study coordinators that other people in most of the randomized control trials.

So that's a little bit about what I do and where I come from. And what I'm going to do today is use an example of a study that I've done to show you how we move and do research in a little different area, and it may be helpful to point out some other additional problems. I'd like to thank my coworkers on this study and thank the Agency for Healthcare Research and Quality for funding it. What was the purpose of looking at this study? I wanted to understand heart disease in women in the period when prevention is most effective and when it hasn't been studied nearly as much. I wanted to understand it before the first diagnosis of coronary heart disease is made and before the first coronary event. I wanted to base the study in primary care. We're part of the problem, and we've got to be part of the solution as primary care clinicians and clinics. The issue of gender has really not been addressed terribly well in that initial consideration of heart disease. So the objectives of the study that I worked on were determining the timing of coronary heart disease diagnosis, determine the likelihood and timing of assessment of risk factors and the likelihood of treatment of recognized risk factors, and all of this in women. This is a study that's a retrospective cohort study. I looked at medical records.

And by the way, for those of you that are trying to follow in the notebook, give up. I changed the slides last night. There are a couple of them there, but you can take them home. They're useful for that. But it's a medical record review study. I looked at women who had had a confirmed heart attack, or myocardium infarction, and I looked back 10 years before that. And you could say, "How in the world can you do that?" Well, I live in Olmstead County, Minnesota, and we have a very unique ability in Olmstead County to do very long-term studies because we have a data infrastructure that really nowhere else in the country has. All medical care—and there are three major medical groups—share this information, so I can track a patient across all of their medical care that can come into my office, or my husband's, who is a general internist, office. And I track that care when they go to the emergency room, if they get referred to tertiary care at that other large institution across the street who some people may know the name of that I won't mention at the moment. Then, we can still track them.

So we can follow women for a very long time, and people in rural areas, as you probably know, tend not to move around as much as people do in more urban areas. So actually, 90 percent of these women had been in the area for at least five years before their myocardium infarction, and 70 percent had been there for nine years or longer. So you can track. The population, however, isn't very representative of the U.S. It's over 95 percent White/non-Hispanic in this age group. We have a tremendous change in our community, and if you look at our children, 50 percent of our children are White/non-Hispanic, and the other 50 percent are a variety of Asian, African-American, Somalis—who prefer to be called "Africans" and not "African-Americans"—and other groups that we have. So we will be changing in a few years. We have people that have insurance primarily, so what we have perhaps is a best-case scenario, and if we have problems in a best-case scenario, it may suggest we have even more in the rest of it. We looked at risk factors, and I just wanted to remind you quickly of what were the risk factors. Most of these are modifiable. Unfortunately, smoking didn't get on there. Positive family history somehow made it on there instead of smoking, and I apologize.

But hypertension, diabetes, smoking, elevated cholesterol, overweight, and obesity are the most commonly known modifiable risk factors, and these are the ones we looked at. What are our results? We had 150 women. And you say, "Well, that's a pretty small number," but you have to remember we looked at every single visit these women had for 10 years. So we looked at over 8000 visits, almost 9000 visits; 457 hospitalizations; nine years' follow up. The women had their first MI at an average age of about 74, but there was a woman as young as 39 and one that was almost 100 the day she had her MI. The results that are important, coronary heart disease was recognized and diagnosed in only 52 percent of these women prior to their first cardiac event. It was less common in those less than 70, those who are probably most amenable to our preventive intervention. It wasn't that these women didn't have risk factors. Ninety-eight percent of them had one or more modifiable risk factors recognized primary to their first MI.

This slide I hope you can read. This looks a little bit at the age across the top at which they had their first heart attack, and the two on the side are whether or not they received a diagnosis prior to their first MI. And you can see as you go along in the age groups, suddenly the top number somewhere around age 65 gets larger than the bottom number. So women were more likely to get a diagnosis prior to their event. But all of those women less than 65 didn't know that they had heart disease. The treatment of the risk factors that were recognized varied. Eighty-one percent of the women who had hypertension or high blood pressure received some type of drug therapy. Only 28 percent of those with elevated or abnormal lipids received drug therapy. And those of you that know about drug therapy or therapy for lipids know that telling people, "Oh, would you just eat right and exercise?" works about as well in lipids as it does in obesity or overweight—not very well. So we have a huge gap between the number of recognized risk factors and the number of treated risk factors. I didn't even go the next step and put up the ones that reached goal for that treatment. It's even too discouraging. It's too early in the morning for that.

A diagnosis of coronary heart disease did increase the likelihood of getting these risk factors treated, which helps confirm that it is important to have a diagnosis. It seems to help with the teachable moment for both the clinician and perhaps the patient and family. This is the number of risk factors these women had. The first is five years before their MI, and the second is at any time. You can see that five years before their first heart attack, there were many women with multiple risk factors. These women were perfect candidates for preventive services, preventive services that they didn't receive. This is the timing of their diagnosis before their first heart attack. The line in the middle of the black one is everyone combined, but the line at the top is after age 70. It's the line at the bottom that I don't like very well. That's the gold line. These are the younger women, women less than 70, who are much less likely to be diagnosed with coronary heart disease. This is the documentation of their risk factors. You can see, especially hypertension, very, very prevalent. And remember, these are White, middle class women. It would probably look even higher in other ethnic minority groups.

So why are these women being missed? Did they have no visits? No. I told you they had almost 9000 visits in 10 years among these 150 women. Did they have no symptoms? No, we have the data for that; and unfortunately, it's not analyzed sufficiently to present it to you. But these women did present with symptoms. Did they have different symptoms? Yes, they did, and a lot of those symptoms went unrecognized as coronary heart disease symptoms. Were they given other diagnoses? Yes, and when we started this study, we were joking a little bit that a woman came in and had kind of a discomfort in her abdomen and her chest, and she got a valium and a referral to the psychiatric service, and the men got a treadmill. It wasn't quite that bad, but there were many times that that's what happened. And when these women got another diagnosis, and that other diagnosis did not prove to solve the problem, they didn't get reevaluated for coronary vascular disease or coronary heart disease. Physician inattentiveness? Probably. Physicians, again, not thinking heart disease when a 50-year-old or a 45-year-old or even a 65-year-old woman comes in. Cultural issues? Absolutely, I believe. There's women's culture, we talked about this yesterday a little bit; lack of awareness, as Dr. Wenger pointed out; lack of resources; and family needs first. You hear that again and again, "Well, I'm not going to go in. This is just a little indigestion discomfort because I have to do this or that or the other with my children, my grandchildren, whomever." We have a lot of cultural issues.

In about 10 days—actually, in two weeks exactly—my son is getting married to a Cambodian woman in a very elaborate Buddhist ceremony in which she changes clothes 21 times, which is going to be fascinating. But I talked to my son's future mother-in-law a little bit. She is from Cambodia and has been here for about a third of her life is all. And when we talked about heart disease, she said, "When I carried my children through the killing fields," she didn't call them that, I did, she described them very vividly, "of Cambodia to get to the refugee camp in Thailand, my heart was broken. When I watched them kill my brother and my father, my sisters, and my first husband, my heart was broken. How can you talk to me about heartbreak or heart disease?" It brought home to me that I don't understand where people come from many times, and how can I talk about something that really isn't very important to them when their heart, as she said, is already broken? The Mung culture is one that's very prevalent in Minnesota, also has a very different perception of heart disease and what it means to have bad things going around in your body like cholesterol. And then, there's rural. Rural does have a culture. Anyone who tells me that there is no difference between rural people and non-rural people has never lived in a rural community. Thank you.

And there's different rural cultures. My husband is from rural Georgia, and we've lived in rural Midwest and Minnesota. They are not the same, either. What do we do about disseminating these findings? We've got to get this kind of information out again and again and make people think it's interesting enough to listen to and do something about. We've got to evaluate what they mean, but we have to translate this information. What gaps does this show? We have to talk to all the parties involved. I want to do what we now call participatory research. I want to go out into communities. I want the community to decide what my research questions should be along with me helping them decide what the research questions should be. Thank you. I also want people to create, but I don't want you to create without evaluating, please. I see huge, fantastic projects that are going on; but nobody is assessing why they work or even if they do work. I don't think that's as prevalent in this group as it is in others, but how does that help to know this works in Chicago? Well, how would that translate to Brooklyn or to Rochester, Minnesota or to Macon, Georgia? Please evaluate.

My time is up, and I have a conclusion. Missed opportunities: 48 percent of these women in this White, middle-class, best-case scenario didn't have a diagnosis of coronary heart disease before their event. The women less than 70 were much less likely. I think we have failed prevention. I can't tell you if it's a gender bias. I guess I don't even care if it's a gender bias. It's a big problem that we have to solve. Thank you.