Transcription:
Parts and Labor: Disparities in Care for Uterine Fibroids

Melanie Cole: Welcome to Better Edge, a Northwestern Medicine podcast for physicians. This episode is part of a Better Edge mini-series.

Dr. Angela Chaudhari: Welcome to Parts and Labor, a roundtable discussion with the OB/GYN experts here at Northwestern Medicine. My name is Dr. Angela Chaudhari, and I'm a minimally invasive surgeon and serves as the Chief of Gynecology and Gynecologic surgery here at Northwestern Medicine. I will be your host today, discussing a very common disease, uterine fibroids, that impact so many people's lives every single day.

Today, we'll be focusing on disparities in care for uterine fibroids and how we here at NM recognize and try to address these disparities every day. Let's meet our panel. First up, Dr. Melissa Simon is the George H. Gardner Professor of Clinical Gynecology here at Northwestern University and serves as the Vice Chair of Research and the Director for the Center for Health Equity Transformation. Next, Dr. Susan Tsai, a board-certified and fellowship-trained gynecologic surgeon, associate professor, and the Associate Program director of the Fellowship in MIGS. And next, Dr. Lindy Yang, a fellowship-trained minimally invasive gynecologic surgeon, associate professor, and assistant PD of our fellowship.

Let's begin with Dr. Simon. Now, before we dive into fibroids, I would love to hear more about the Center for Health Equity and Transformation here at Northwestern.

Dr. Melissa Simon: Thank you so much for having me. Yes, our Center for Health Equity Transformation has been alive and running since about 2018, and the focus is really general on all things health equity. We've done a lot of work on women's health specifically, but more broadly across the whole spectrum of health equity, especially in the area of research, training and education. We have a lot of workforce development pipeline programs for many underrepresented populations and students from across the Chicagoland area, and we do a lot of policy work and community engagement. A lot of the research has been focused on a wide variety of topics including cancer care delivery, equity, patient navigation of all types and also maternal mortality and perinatal care improvement.

Dr. Angela Chaudhari: Dr. Simon, I've been so impressed reading about the center and sort of everything that you've done. I know so much of your research has been around public health and how to get patients access to care. And as you know, we're talking quite a bit today about uterine fibroids. So I'd love to hear your thoughts about, you know, what the issue is right now in the Chicagoland area in Illinois. What is happening for our patients and how are they receiving care?

Dr. Melissa Simon: So it's really important to understand that access to care has many dimensions. It's more than just being able to have insurance and being able to go down the street or a few miles away to a clinic or hospital. Access of care has many domains including quality of care. Wherever you get your care, it should be the same quality, same consistency, same basis for evidence, anywhere In the country or world.

The other dimension is the healthcare team that you interact with. There should be no bias, no judgment, culturally responsive care. Another part of access is financial toxicity and all the out-of-pocket costs that entail going to a clinic or multiple clinic visits or in for surgery or a hospital visit. There's a lot of out-of-pocket costs that include transportation, includes taking care of your children or other people that you give care to, taking days off of work or months. And then, there's the aspect of care around the social determinants of health, so social and economic factors, health literacy, things that impact health more negatively for people who live in lower resourced or disinvested areas.

Then, there's the experience of care, your historic experience, not just yours, but your families', your friends', your social networks' historic experience with care with respect to being mistreated, not valued, not heard. And so this distrust has been there and especially for black or African American populations. It's been here for centuries in this country. And we've earned the distrust, and so we have to work really, really hard to earn that trust back.

Dr. Angela Chaudhari: You know, for so many of our listeners that are listening today and caring for these patients, you hope and you think they have excellent intentions. Their goal is to treat every patient the same, to do that without bias. But we as clinicians also know the difficulties with our clinical days, right? We are stuck working in very small timeframes and we are working with patients; for our primary care physicians, so many different problems. What advice can you give to a primary care provider who's listening to that patient's complaint for the very first time to avoid some of the dismissing of that complaint that so many of our patients complain about?

Dr. Melissa Simon: Yeah. I think for anyone who sees patients, it's important to check your biases at the door. First is to understand what it is that triggers you. Is it because you're running late already in clinic like many of us do or you just had a bad day at home or a bad week in general? Then, understanding that, you know, that particular issue of heavy periods or other complaints that that patient is bringing to you does not have to be resolved in one day or in that 10 or 15-minute clinic visit. Oftentimes, especially physicians, but clinicians in general want to solve the problem right away, and that is not reality.

And quite frankly, most patients would tell you, "I understand it's not going to be solved overnight. I understand this is a partnership and a relationship over time." Patient centeredness in healthcare decision-making is really important. So first, setting expectations upfront and slowing the process down. A few visits versus trying to get it all done in one visit would make a difference in terms of the pace, speed and tone of your voice and just how much you actually exude the fact that you really do care and that you really do want to listen.

Dr. Angela Chaudhari: Well, I certainly hear you, Dr. Simon. As a surgeon, I often feel that way, that I'm trying to solve a problem. But it is so interesting, right? And I'd love to get Dr. Yang and Dr. Tsai's input on this as well, you know, as I work with patients, sometimes even when I'm doing a telehealth visit, I can see in the tone of their voice, in the look on their face, in their body language, as I start talking about, for example, treatment options, you see people, you know, either nodding, "Yes, I want a hysterectomy" or looking at me with this wide-eyed like, "That's the last thing I want to talk about today." Dr. Yang, have you had any experiences with patients like that where you thought, you know, a certain treatment option was the best one for them, but really they weren't on the same page?

Dr. Linda Yang: I have, and I would echo some of those struggles as a clinician and surgeon in terms of wanting to make recommendations and offering a treatment plan by the end of the visit. But I think, as Dr. Simon alluded to, in reality, I think it's a step-wise process. When I sense that patients may not be ready to make a decision, I think it's really important for me, again, to kind of ask them, you know, what their goals are, you know, at the end of the process, what their goals are at their initial visit or subsequent visit, so I can really help them. I find myself reflecting upon my position and then putting myself in the patient's perspective to really understand why it is that we have not reached a decision or a firm treatment plan.

Dr. Angela Chaudhari: I think one of the things that we really need to think about is oftentimes the patients that get to our office, they're the lucky ones, right? They're the ones that are now able to come to a center where we're going to really be able to offer them all the different opportunities. It's the patients that can't get to us, whether that's insurance, whether that's literacy, whether that's the availability to travel. We've been trying to sort of overcome some of those barriers. Telehealth, I now see patients from all over the state, who can talk to us about whatever their gynecologic problems are. And we can get imaging from their local centers and then bring them up when we actually need to evaluate better for treatment options. So some of that definitely is part of what we're trying to do to improve these disparities. Dr. Simon, do you have any ideas for us on what more we can do?

Dr. Linda Yang: Well, you also have to understand the context. So specifically, for black and African American people who have uteruses and affected by fibroids, they grew up basically thinking that this is normal. It's normal to have heavy periods. It's normal to have periods for 10 days plus. It's normal to wear multiple pads in one sitting or diapers and towels. It's normal not to wear white on those period days because you're afraid of leaking and showing through that white dress. It's normal to have pain with sex. So when you are socialized up through where your sisters, your mother, grandmother, family, friends, all have those same symptoms or experiences, then how do you know that's abnormal?

Also, in addition to that, understanding the context of fibroids haven't been talked about much for many years until very recently. And then, when a patient comes into a healthcare system, that's already a big deal, especially if they don't trust providers in general because of those historic things I talked about earlier. Then, you've got to understand there's stigma to revealing you have heavy periods or pain with sexual intercourse. There's a lot of hesitancy because people don't feel empowered to ask questions or to bring up the real concern as to why they're there. I mean, how many times as a provider has it been until the time you are actually exiting the clinic door, the room, and then the patient goes, "Well, doc, actually, this is what I'm here for." And that is not on purpose or by accidents, because they're afraid, people are afraid to come to the healthcare provider.

Dr. Angela Chaudhari: When that happens to me in my office, I feel as though I must have done something right that visit, that by the end of that 10 or 15 minutes I spent with them, that I was able to glean that trust in order for them to come forward. And I always say as a provider and what I teach our residents and students, if that happens, don't talk to them from the door. Come back, sit down at the desk and have a conversation. I think that is just such a key point, Dr. Simon.

And you know I mentioned our residents, right? Like really trying to educate. Dr. Tsai, you've been here on faculty for so many years and part of the surgical education curriculum. Could you share sort of how we try to teach this to our trainees?

Dr. Susan Tsai: Yeah. What I try to teach the residents is that, you know, everything that the patient says is important. And as Dr. Simon alluded to previously, we as physicians cannot conquer or address every single issue, that this could take multiple visits, so that we can come to the plan and the treatment that is appropriate for the patients. And so we do have that luxury of giving the residents some time. When the patients come to our clinics, we get a thorough history. And after that, we really sit down and come up with options for the patient and what they think is appropriate and really engage them on their treatment care.

Dr. Angela Chaudhari: One of the keys that we really need to do as not just clinicians, but educators, is to make sure that this next generation of physicians comes through working from a place of bias. We need to role model that behavior such that our communities that we work with every day can begin to have more trust in the system.

There's so many patients that come into my office that said, you know, "I was at this resident clinic at this university. And I got seen by 10 different physicians and nothing was solved. Nothing happened." And of course, as a clinician, our first instinct is to be frustrated. We have to go pull records from eight different hospitals and try to figure out what people have done. But really, imagine if it's frustrating for us to pull all those records, how frustrating it must be for the patient who really hasn't felt heard, hasn't felt listened to and really hasn't gotten treatment for what they really needed. And so, I think that's so true, Dr. Tsai. What we really need to be doing is educating this next generation to get them to the point that they understand how to manage these conditions and how to really care for our patients.

Now, I'm going to pivot a little bit because I think that one thing that really comes up is, you know, we've been talking about patients from different communities and we know that fibroids impact more than 80% of black women, 80% in our country. It is a huge number. We know in black women that fibroids actually present at younger ages and might impair their ability to go on and have families. And I would love to hear everyone's thoughts about, you know, patients that they've maybe experienced, that have gone through that or what we can share with clinicians that they can share with their patients about this topic. Dr. Yang?

Dr. Linda Yang: Especially if you're establishing a relationship with a patient, I think it's imperative to at least start the conversation with the patient regarding their desire for fertility or pregnancy in the future. They may not have an answer, and that's okay. It is critical that we acknowledge, you know, their fertility desires, even if they're uncertain at the moment, be prioritized, and to ask whether or not they're currently attempting to conceive and potentially even bring up options in terms of maximizing fertility and potentially preserving fertility down the road, even if they aren't focusing on that as a priority in their life at the present time.

Dr. Susan Tsai: I completely agree with Dr. Yang. I think because fibroids potentially present much earlier in African American populations, do we potentially have to intervene earlier because they have it at such a younger age, even though they're not yet ready to get pregnant, if they so desire that in the future? And how can we then preserve that uterus? So, I think it's important that we get that information and ask them what their fertility plans are, again, even if not ready, but do they expect it or think about it in the future?

Dr. Angela Chaudhari: Dr. Simon, I would love to hear your thoughts, because I know so much of your work has been around maternal morbidity and mortality, and this idea of our patients who come in at young ages need treatments for their fibroids, maybe surgeries that can impact that in the future. When you work with these populations, and obviously we're trying to improve morbidity, you know, across the city, across the state, across the country. But for these patients, you know, they come into us with fear about how this might impact a future pregnancy. Can you speak to that as a researcher, as a public health person?

Dr. Melissa Simon: Yeah. I think it's a complex question, right? So, we know that preterm birth and high infant mortality rates disproportionately impact people who are black or African American. We also know that our maternal mortality rates in the United States are egregiously different between white people and black people, and even Latinos. I think it's really important to understand that fibroids Are one of those things that factor into promulgating that infant mortality rate, which a lot of that is from pre-term birth, having a baby too early in pregnancy. So this issue really does deserve time in the clinic. It deserves more than one visit, and it deserves slowing it down like we talked about earlier.

Dr. Angela Chaudhari: Yeah, I completely agree. Now, before we kind of close up, I do want to address sort of one, I like to say, big elephant in the room when it comes to disparities. Myself and Dr. Tsai have the opportunity to work here at Northwestern as part of our Gender Pathways program, which is a program that was initially designed for surgical transition for our transgender and gender nonconforming patient.

Oftentimes, when we talk about fibroids, we talk about women with fibroids and how they're going to be impacted in their fertility, but we don't always address our patients who are transgender or who are gender nonconforming, who have some of these issues and maybe don't feel comfortable coming forward and talking about them. Dr. Tsai, can you talk a little bit about fibroids in our transgender and gender nonconforming populations?

Dr. Susan Tsai: Yeah, for my workup for transgender patients and whether or not they want to pursue surgery for gender-affirming surgery, I often will get an ultrasound. And that's more to see is there any pathology that I need to worry about in terms of surgical planning, whether or not they have ovarian cysts or fibroids. We really don't know what the incidence of fibroids is in transgender patients. I think oftentimes we find them incidentally when we are doing that workup just to assess whether or not there is some sort of pathology that we could run into. But there currently isn't any data for that right now.

Dr. Angela Chaudhari: Yeah. One of the things is really just making a safe space for these patients to come in and talk about any gynecologic issues they have, and that's hard. We're very lucky at the Center for Complex Gynecology where we see patients. We started the process of all-gender bathrooms, of extensive training for our staff, ensuring that we're using appropriate pronouns, ensuring that we're not deadnaming our patients despite what their insurance might say.

When we think about fibroids in particular, we have no idea how common fibroids are in these populations. For patients who've been taking testosterone for a very young age, they may actually have less fibroids because we actually are suppressing the estrogen that creates fibroids. We know that a lot of our patients don't start testosterone until much later in life, and so absolutely have patients coming in their forties who have these sorts of complaints. And so like Dr. Tsai said, really listening and trying to better understand what their issues are.

So, you know, I'd really like to wrap us up today. Dr. Simon, if you could just share with us what you think the most important thing is for our listeners to leave with when we think about disparities, both in healthcare for patients with a uterus, for patients with uterine fibroids, what can you share with us in final parting words?

Dr. Melissa Simon: I think it's really important to get back to the basics. How would you want to be treated in a clinical care setting when you have a gown on, you know, you're naked under that gown, you've experienced bad things, or your family's experienced bad things in healthcare providers' offices, in hospitals before? And you're scared. You're scared about the condition you have. And you just don't know where to start. And so if you understand that, then you can come from the point of how best to take it slower, sit down and really try to listen and try to get that space created between you and the patient who is coming with that complaint of fibroids or heavy bleeding and really just, you know, go slowly, set expectations, understand that it's not going to be solved in two minutes or 10 minutes, and then it will take us a few more visits. But when you can really try to center the patient and say, "What are your goals?" That this is not going to happen overnight, but we're going to work together to try to get your issues addressed to the best of our ability together.

Dr. Angela Chaudhari: Dr. Simon, thank you so much. Every time we talk, I'm reminded so much of what I need to be working on every single day in my office and I so appreciate it. And thank you to all of our panelists today.

Melanie Cole: To refer your patient or for more information, please visit our website at breakthroughsforphysicians.nm.org/obgyn. That concludes this episode of Better Edge, a Northwestern Medicine Podcast for physicians. Please always remember to subscribe, rate, and review this podcast and all the other Northwestern Medicine podcasts. And for updates on the latest medical advancements and breakthroughs, please follow us on your social channels.