A team of UIC Center for Clinical and Translational Science pilot grant awardees is examining the implementation of a tool to screen women with sickle cell disease for menopause.
Marwah Farooqui, DO
Assistant Professor
Department of Medicine, Division of Hematology & Oncology
UIC College of Medicine
Gelila Goba, MD, MPH, FACOG
Associate Professor
Director of the Global Women’s Health Fellowship
Department of Obstetrics and Gynecology
UIC College of Medicine
Lewis Hsu, MD, PhD
Professor
Director of Pediatric Sickle Cell CenterProfessor
Department of Pediatric Hematology & Oncology
UIC College of Medicine
EPIS Framework
NIH Implementation Science Methodologies and Frameworks
0:00 TEASER, MARWH FAROOQUI
I think a lot of the hesitancy actually comes from not just sickle cell being a rare disease, and providers not being comfortable with sickle cell disease, but also because menopause itself is not on our radar. Nationally, we're making more headlines on menopause as well as women's health. I think that's actually going to help us overcome some of these barriers, you know, both looking at sickle cell as a lifespan disease which has been the rhetoric in the past decade, and then also starting to shift our focus to women's health issues as they age.
00:42 Intro Voice Over (VO), Lauren Rieger:
Welcome to Collaborative Endeavors, a podcast about how scientists from different areas of research come together to tackle big health challenges, leading to better therapies and healthier communities.
Today we are highlighting one of the Center for Clinical and Translational Science’s recent implementation research pilot awards. Led by Dr. Marwah Farooqui, an adult hematologist and assistant professor in the division of hematology and oncology, this project seeks to implement a menopause screening tool for women with Sickle Cell Disease.Also supporting this effort are Dr. Gelila Goba, a gynecologist with a research focus in improving health outcomes related to women disproportionately affected by disparities, and Dr. Lewis Hsu, professor of pediatric hematology and oncology and director of UI Health’s pediatric sickle cell center. Together, the team is trying to revolutionize the future of sickle cell care to meet the evolving needs of their aging patient population.
Dr. Farooqui explains how this project was conceived….
01:49 Dr. Farooqui
This project idea came from my patients themselves. As I started building my practice with women who are aging and potentially going into menopause, they were asking me, “hey, what happens as I go through menopause? Are some of my symptoms related to menopause?” And I was at a loss of words. I did a literature review, and at that time I noticed that there was only one study done out of Brazil at that time in a very small subset of patient population. And I quickly realized that we don't know much about menopause in this unique patient population. So that's kind of how it started. And you know, when we're talking about sickle cell disease, there's multiple symptoms that these patients can present with, and they may have significant comorbidities as well as organ damage that really confound the diagnosis when you're trying to figure out is this sickle cell itself that's causing this? Or is it some other issue?
Perimenopausal women often deal with hot flashes as well as mood swings, insomnia. They may have joint pain, arthritis- type of pain as well, and then they may have genital urinary symptoms, such as vaginal dryness, recurrent UTIs. Some of these symptoms are also common in patients with sickle cell disease. We often see insomnia, we often do see urinary tract infections in women with sickle cell disease, as well as vaginal dryness. Pain is notorious in sickle cell disease. You know it's more of a vaso-occlusive pain episode. But, you know, have all these years have we been labeling it as a vaso-occlusive episode and ignoring this could be potentially related to the pain of aging and going through different menstrual cycles in life. So anytime there's two diagnoses going on, we as physicians always have to take a step back with sickle cell disease. It's even more of a convoluted picture. So you know, the first goal was to try and distinguish the symptoms of menopause from sickle cell disease. And really there are no biomarkers for sickle cell disease for menopause itself in the sickle cell world.
When we first started collecting our preliminary data, we noticed that we don't even have the last menstrual period being collected for a woman, let alone a conversation around menopause or their menstrual cycle. So the goal was to try and change that clinical practice, and raise more awareness among healthcare staff as well as providers. Really, this implementation science project is centered around trying to establish a way of menopause screening in the sickle cell clinic by sickle cell healthcare staff and providers. Doctor Hsu's expertise in implementation science comes in because of his track record, and that's why he's one of my Co-Is, and Dr. Goba helps me with the menopause and the gynecology aspects of it that I don't understand yet.
05:06 VO:
If it seems counterintuitive for a hematologist to screen their patients for menopause, the team agrees. They explained how the unique relationship between sickle cell providers and their patients creates an situation where they become the de facto health care provider, regardless of their expertise- or lack thereof. While this creates obvious challenges, in this case, there was an opportunity, as well. Here is Dr. Goba…
05:34 Gelila Goba
When Dr. Farooqui came to me with the idea, I was very much excited and happy because menopause is part of a woman's chapter of life that's oftentimes, we don't necessarily screen routinely, as well as provide options for the management of very much significantly debilitating symptoms that have a severe impact on their quality of life. For example, they come with like, not able to be able to sleep. And these are women who have a full-time job. If you have to wake up in the morning and go to your work, but you haven't slept, it is significantly impacting their day-to-day life. They're not able to focus on advancing their careers. Also, this is the time that women are actually very much productive and at the higher level of their occupation. There are issues related to urinary incontinence and vaginal dryness that Dr. Farooqui just explained. So, the fact that we don't really address it really well, in general, in the general population is one major problem.
The sickle cell population is a very special population. I do completely agree with Dr. Farooqui that when they come to us particularly, it is for bleeding, but when it comes to routine care, they trust their sickle cell doctors, and they probably give a lot of weight as well for what to do and not to do. So, filling this knowledge gap and addressing it as a problem, was something that I quickly jumped on. In general, women with chronic illnesses usually go through life transitions sooner than normally expected. That would be the age of 51 for the normal general population. But whenever a person goes through menopause before the age of 40, or around that time, we call it premature ovarian failure. That's essentially its own health risk. And what we discussed was that most of our sickle cell patients actually now survive treatment and quality of life has improved, they are now living past the age of 35, and that is how they are voicing their concern. So, the patients are coming up with a problem, so how can we- from the provider side- be able to help?
07:59 VO: Dr. Hsu added his perspective
08:02 Lewis Hsu
On the one hand, I was sitting here going, “What on earth am I doing here as a pediatrician and a hematologist?” Having anything to do with menopause completely foreign to me. But I realized also that this is probably part of the problem, that previously the care of sickle cell has been mostly in the hands of pediatricians for whom menopause is about the farthest thing from our minds. And so many of the quality measures and structures - we're not set up with anything like this in in mind. It was just about surviving into adulthood and about things that are immediately life-threatening or potentially life threatening. And so, I think that much of what I’m trying to contribute is the idea that the goals and the comprehensiveness of care for sickle cell needs to change. It's time for change- not quite a revolution, maybe- but at least having quite a bit of change. And what we've come to find is that medical systems don't like to change. People just don't like to change and implementation science has now given us new tools to help manage that better and smarter. And so having implementation science frameworks and tools and tricks can make stuff happen smoother, more efficiently, not waste so much time relearning things. So, what I'd like to bring to this is the small experiences that I've had that could translate into faster implementation of what's a very, very reasonable thing to do. But we’ve got to get people to change.
09:47 VO:
For those who are new to the field of implementation science, the NIH defines IS as quote, “the study of methods to promote integration of research findings and evidence into healthcare policy and practice.” Researchers commonly use an established model or framework to determine how to best move an intervention into a real-world setting. In a nutshell, these models help guide conversations with key stakeholders, identify factors that can help or hinder progress, and solidify processes to integrate this new thing as seamlessly as possible for those doing the work, without jeopardizing the outcomes. If you are interested in learning more about these models, we’ve included some links in the show notes.
Dr. Farooqui landed on the EPIS (E-P-I-S) framework for this project, and during the exploration phase, the team identified a menopause screening tool already in use in Canada, South America and Asia. Developed by Dr. Susan Goldstein, Menopause Quick 6- or MQ6- is used to screen, diagnose and manage menopause in busy primary care settings. The team then worked with a panel of sickle cell and menopause experts, a well as sickle cell patients themselves, to design an adaptive version of the menopause questionnaire. The idea is that anyone who screens positive for menopause would automatically be referred to gynecology or a menopause expert for a definitive diagnosis and treatment plan. The team was off to a strong start, but as they moved into the Preparation phase of the EPIS framework, they began to encounter those barriers to implementation.
11:26 Dr. Farooqui
We did a preliminary needs assessment, both with the patients as well as the sickle cell healthcare team to determine if is this even feasible in our center. Do people care about this? And patients were loud and clear- women wanted us to address their menstrual health. And providers did note that it was an important topic that needs to be looked at more closely in terms of aging and sickle cell disease.
I was thinking, “Hey, it's not gonna be a big deal. We can do it!” All the providers were excited, and I was like, “Let's go. Let's do it!” And then I actually talked to the providers one-on-one, because as a team, everyone says yes, but when you talk to them one-on-one, even nursing staff, they show hesitancy. Because time. We're all limited for time, and reasonably so. Time and space are always a limitation. No matter what. At this time, we have a really robust clinical research center at UI Health for sickle cell disease. And I did brainstorm with some of our research coordinators who have done other survey type of projects before to see what their thought process was. They said, “You know, this is not going to be feasible for you to expect the providers to do this, or for you to expect the nursing staff to do this on every single patient. Is there a different tool we can utilize?”
So what we ended up doing is, we are trying to embed the adapted screening tool into the EMR itself where it's given to the patients via MyChart, and even prior to coming into their appointment, they are able to answer these 8 questions. Even with trying to embed it into the EMR, it will be difficult, because providers don't like best practice alerts. I don't, either. And then I'm working closely with the clinical informatics to see how we can roll this out. It's sort of similar to how in the COVID pandemic we would ask the COVID questionnaire before the patients even came in. So we're trying to model off of that.
13:40 Dr. Hsu
What's underpinning some of this project, too, is that sickle cell clinic is not a high resourced clinic other than that we have research assistants around. And sickle cell patients are part of a population that has been hit with all kinds of health disparities. Sickle Cell Disease is practically a poster child for underserved populations and health disparities. So to be able to bring advanced services and new things is remarkable. And to be able to navigate the system using some of the tools of implementation science is what this project is about.
14:22 VO:
As our conversation neared its conclusion, the team talked about some of the greater contextual challenges around this project. Dr. Goba, for one, addressed the fact that, particularly in the United States, women are often forgotten about after their childbearing years. Dr. Farooqui elaborated on some of these challenges as they pertain to aging sickle cell patients specifically.
14:44 Dr. Farooqui
I think a lot of the hesitancy actually comes from not just sickle cell being a rare disease, and providers not being comfortable with sickle cell disease, but also because menopause itself is not on our radar. I don't remember learning about menopause in detail in medical school. And as we go through internal medicine residency, it's almost never talked about. Very few primary care doctors address it. So really, at least in the United States, it's been very focused on either if a family practitioner tends to specialize in women's health, or it's focused on the gynecology setting. Nationally, we're making more headlines on menopause as well as women's health. I think that's actually going to help us overcome some of these barriers, you know, both looking at sickle cell as a lifespan disease which has been the rhetoric in the past decade, and then also starting to shift our focus to women's health issues as they age.
15:52 VO: Dr. Hsu also commented on the potential for aspects of this project to be translated to other chronic diseases.
15:59 Dr. Hsu
To be able to try to do this in a setting that is complex medical care already, and in an urban, underserved population, will be remarkable. And so, this could be a demonstration project for other disease conditions, too, where there's lots of stuff going on, but menopause potentially could be impairing or impacting what else is happening for other multisystem, complex disorders.
16:28 Dr. Farooqui
The mortality and the life expectancy of individuals with sickle cell disease is almost two decades, if not more, lower than the average life expectancy. Now, it's reported that the average life expectancy of a patient with sickle cell disease is 54, and as we continue to make headway on that number, I want my patients to be able to age gracefully and not be down because of their disease. Dr. Goba had mentioned when you undergo menopause at an earlier age, when you have premature menopause or early menopause, it does have significant outcomes, not in terms of just the menopausal symptoms that I had mentioned earlier, but also cardiovascular health. And in a disease such as sickle cell disease, which already has some predisposition to cardiac and neurological comorbidities, this could mean a lot. If we're catching these patients early on, diagnosing them, and treating them appropriately, we may be able to make more headway into improving their quality of life- as well as the quantity of life- as they age.
17:39 Outro VO
Collaborative Endeavors is produced by me, Lauren Rieger, on behalf of the Center for Clinical and Translational Science (AKA the CCTS) at the University of Illinois Chicago.
To learn more about this team and the field of implementation science, visit the links in our show notes.
The CCTS is supported by the National Institutes of Health’s National Center for Advancing Translational Science through their Clinical and Translational Science Award. Opinions expressed by guests of the show are their own and do not necessarily represent the views of myself, the CCTS or our funding agencies.
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