Disparities in Multiple Myeloma: Quality Improvement Initiative Reveals Gaps Between Oncology Providers, Patients in Views of Costs, Risk of Treatments

How can health systems close disparities in care? A quality improvement (QI) initiative launched in 2020 sought to examine this question in relapsed/refractory multiple myeloma (R/R MM). The first round of data was collected from 2 large oncology groups in academic settings and focused on patient concerns. In the second phase, the effort drew additional participants from 4 community-based oncology practices, “to greater evaluate disparities with electronic medical records [EMR] audits and team-based audit feedback sessions, to identify factors which could enhance more equitable care,” according to an abstract presented during the 64th American Society of Hematology (ASH) Annual Meeting and Exposition in New Orleans, Louisiana.

Surveys were completed by 59 hematology/oncology providers and 100 patients with R/RMM, of whom 47 were Black, 50 were White, and 3 were Hispanic. A baseline EMR audit included data from 200 patients with R/R MM. The survey found that patients and providers can view situations very differently; gaps in trust are wide among all patients but especially so between Black patients and their cancer care providers.¹ As part of the QI process, the oncology provider groups received the survey information, and approximately half the providers developed improvement plans.

While in New Orleans, Evidence-Based Oncology™ (EBO) spoke with lead author Joseph R. Mikhael, MD, MEd, about the survey findings, the ongoing QI initiative, and the challenges of bringing greater diversity to clinical trials. Mikhael is a professor in the Applied Cancer Research and Drug Discovery Division at the Translational Genomics Research Institute, an affiliate of City of Hope Cancer Center, in Phoenix, Arizona. He is also the chief medical officer for the International Myeloma Foundation and was recently elected treasurer of ASH.

This interview has been lightly edited and condensed for clarity.

EBO: Can you discuss your earlier QI initiative and how it informed this current effort to identify gaps in MM care?

Mikhael: In the world in which we’re living now—in multiple myeloma and all diseases—there has been, thankfully, a greater emphasis on understanding health disparities. It really is a multipronged challenge and it’s going to require a multipronged solution. Our initiative aimed to understand, from many angles, what may be driving some of that disparity, both in the testing that’s done but also in the communication that occurs between providers and their patients.

In our initial look [in 2020], we started to see that there is a difference, almost like “He said, she said.” There are 2 different opinions about literally the same conversation. We wanted to understand the perceptions of patients vs their providers, in their goals of treatment and how they are viewing their current response or achieving those goals of treatment; and what their greatest concerns are about treatment. Early in the study, we started to demonstrate that there was a discordance between the two. Going into this study, we wanted to expand our thinking and our evaluation to incorporate differences in race of the patient, as well as the difference between an academic and a community setting; again, the goal was [to] look at this through a different lens.

EBO: Your new findings identified discordant beliefs between physicians and patients about the costs of care and the risks of certain treatments. How do these gaps manifest themselves in clinical practice?

Mikhael: The study highlights the critical nature of that doctor/patient or health care provider/patient relationship. The essence of this is the study is highlighting the importance of listening to our patients and understanding their perception. That discordance that we demonstrated was almost a historical discordance, in which the physician assumes that the patient is most concerned about their finances, when the patient’s concerns may be very different—and may include the toxicities they may experience and the quality-of-life impairment that they may have.

There’s no doubt there are patients for whom the cost of their treatment is their greatest concern. But as a physician, I can’t go in assuming that based on demographic information, or racial and ethnic background, or really anything about the patient until I have listened to them. And so, how that manifests in the clinic is that a physician may or may not even ask those questions; he or she may just make the assumption. If I were to boil down the whole of this study, it is to remind our health care provider colleagues that we should not make assumptions about patients—that we really must listen to their concerns, what their goals of therapy are, so that we can engage in a genuine dialogue as opposed to a monologue.

EBO: Would you say that manifests itself in not offering a more expensive treatment or an option to join a clinical trial?

Mikhael: Absolutely. It’s one thing to assume in one’s mind. But then, what actions come out of that assumption are exactly as you’ve outlined. Assumptions about someone’s financial situation may translate into simply assuming that the patient cannot have this agent that typically has a greater co-pay; the provider may just assume the person’s not interested in a clinical trial. Conversely, they may assume that a certain toxicity is just going to be an issue for them and it doesn’t really matter if they can’t drive, because we just know that the drug is so important. I’m going to minimize that ocular toxicity to the patient, because I didn’t realize that this patient’s whole lifestyle is based on their ability to drive, for example. These aren’t theoretical phenomena. It’s one thing to demonstrate a discordance on paper, but this really influences the selection of treatments—and that was part of what we tried to demonstrate in this study. In future studies, we will have to see the downstream effect of those kinds of assumptions.

EBO: You found that only 14% of Black patients felt completely involved in their treatment decisions, and only a little more than half of White patients feel completely involved. What has been the reaction to these findings?

Mikhael: We did have follow-up after the audit and the interviews; we also had follow-up discussions with the health care teams, which I think is one of the most powerful parts of this study. It is one thing to capture the objective data, but then we reflect on [those] data. I may be making assumptions in the clinic, but if someone never points this out to me, then how can I ever make a change? That’s the idea of a [QI] project—the improvement aspect to it. And to no surprise, the results were received with some raised eyebrows, with some wondering [whether] this was really happening. And the reality is, in some of the granularity of this study, the health care provider said, “Oh, yes, we have discussed clinical trials with the patient.” But when you ask the patient the same question, a significantly smaller minority will remember that. To me, it highlights the difference between information and communication, as one has said the information is being given out, and yet these numbers are showing to us that our patients are not feeling engaged in that discussion. That is even more so within the Black population; there are many historical reasons why that is so. The small number of those who felt fully engaged is worrisome, but it is even more worrisome when we see the difference between the 2 races. Again, that emphasizes the point that communication and engaging the patient [are] fundamental to patients achieving their goals of therapy. The studies are highlighting that we’re just not doing that well.

EBO: Can you elaborate on the efforts by about half the physicians to address disparities and develop more personalized approaches to patient care? What are specific steps the groups will take?

Mikhael: When we look at their approaches, I put them in 2 categories: there was a general awareness, and then there [are] specific tactics. One thing to come from a study like this is just the sheer recognition that this is a problem. Maybe I say the phrase ‘clinical trial,’ but I don’t take time to really explain it. Maybe, in general, I’m not looking to my patient carefully enough to see [whether] they’re taking in what I’m saying, because I’m so busy typing on my computer.

So, there was a general response: “I want to do this better.” But then there were also very specific tactics, such as taking courses on shared decision-making, and developing, for lack of a better word, a checklist to ensure that in patient interactions, when discussing a new therapy or a clinical trial or autologous stem cell transplant, maybe I need to have a more rigid checklist that I’ll keep with me to ensure that I’ve taken time to ask the explicit question, “What are your goals of treatment as a patient?” and discuss what that may mean.

EBO: Here at ASH, we covered a study of an investigational therapy in MM and saw that in phase 1 approximately 14% of the patients were Black, but by phase 2 the percentage of Black patients had dropped to 8%. How should FDA or other stakeholders respond to these situations?

Mikhael: This is a large part of my life….I’ve had 3 meetings today about participation of African Americans in clinical trials in myeloma. A few essential points: First, many of my colleagues have commented that it’s amazing how much more time the presenters at ASH this year have been spending on their demographic slide. Because it is raising awareness that we need to know who these patients are.

In the United States, roughly 14% of the population [is] African American, which includes me; I’m of African descent. But we know that 20% of [patients with] myeloma…are African American. So, we want to be careful not to just say, “Oh, well, the standard must be 20%,” because it will vary in different regions. But the first step in solving the problem is to recognize that there was a problem, and then recognizing that this problem is not something that can be corrected overnight.

There are many realms of this problem, from the essence of systemic racism to the way the health care system is built, to trust within the health care system, to insurance—be it underinsured or lack of insurance—which affects the African American population more.

And there are much more nitty-gritty, pragmatic issues within hematology/oncology. Some are the things that we address in this QI initiative, such as communication. When we look at centers across this country that enroll greater numbers of African American patients in clinical trials or autologous stem cell transplant, they have a history of trust, they have a history of community engagement—not only when they have something that they want from the community, but also to build a sense of health within that community. And their teams reflect the diversity of their population.

I advocate very strongly that every single clinical trial going forward in multiple myeloma should have a diversity officer, and not for window dressing, but to genuinely ask, “Is everything we are doing in this trial encouraging all minority populations to be a part of this trial?” Or do all the materials have a picture of a 70-year-old White man on it? What about the wording of the trial, in the way it’s being presented? What is happening at the individual physician or health care provider level? Am I practicing culturally sensitive care to recognize that someone may be hesitant to enroll in a clinical trial for a whole host of reasons? What specific strategies can I take? And listening to patients is the most important strategy.

We know that myeloma is a different biology; the disease is twice as common in African American [individuals]. And yet, mortality is twice as high in the African American population with myeloma expected survival being half that in the Black population than it is in the White population. So, you can see that this is a complex issue, but I’m very encouraged that this is on the radar, that people are thinking about it. And it’s going to take work at the regulatory level, at the industry level, at the lay community level, and at the health care provider and health care system levels to be able to address this issue. I think we’ve come a long way in the [past] 24 months, but we have a long way to go and I’m quite positive about the future.

EBO: What are the next steps planned in your QI initiatives in MM?

Mikhael: We are sitting now to discuss what the next phase will be. There [are] still a lot of data to mine out of [this phase]—we didn’t get into a lot of the detail about the differences between an academic and a community center, the differences that were seen in the reporting of cytogenetics, and so on. I would like to see us not only write up this work, but also propose a greater understanding of what the solutions were that each of these groups produced. We’re using this as an opportunity to share more broadly what can be implemented in other places; we’re ensuring that our physicians in particular have more formal training in shared decision-making—because nurses often are very good at this—and understand the concepts of cultural humility or culturally sensitive care. Physicians provide great care to every patient, but they must view each patient individually and have that ability to listen, despite how busy we are in clinic. We’re hoping that part of our QI study will lead to more initiatives. And we are considering expanding it to more centers. One of the limitations in our study was that there was a minority of African American providers in these studies, and most of these centers, the physicians and advanced practitioners were White. It would be interesting to reproduce some of the same work we’ve done in a context where we have African American providers and see [whether] that discordance still presents, in light of what I said before, since part of the multipronged solution is to create a workforce of providers caring for…patients [with myeloma] that comes from the community.

Reference
Mikhael JR, Dooyema SDR, Sullivan S, Carter JD, Heggen C. Identifying and overcoming racial disparities in multiple myeloma care: results from a large-scale equity-focused quality improvement initiative. Presented at: 64th American Society of Hematology Annual Meeting and Exposition; December 10-13, 2022; New Orleans, LA: Abstract 2235. https://ash.confex.com/ash/2022/webprogram/Paper160190.html