Identifying and Addressing Disparities Among Pediatric Patients With de novo HL

Justine Kahn, MD, MS, discusses the Children’s Oncology Group study that identified a survival disparity among patients with de novo Hodgkin lymphoma of different races and economic statuses.

Justine Kahn, MD, MS, a pediatric oncologist, and clinical investigator at Columbia University Herbert Irving Comprehensive Cancer Center, discusses the Children’s Oncology Group study that identified a survival disparity among patients with de novo Hodgkin lymphoma of different races and economic statuses.

In the pooled analysis of individual-level data from 1,605 patients, the 5-year overall survival differed between patients who identified as White, Hispanic, or Black, as well as between patients who were low-income compared with high-income or medium-income. However, the was no difference found in terms of event-free survival across these groups.

The analysis concludes that compared with patients who were non-Hispanic and White, patients who were Hispanic or non-Hispanic and Black had a 2.7-fold (95% CI, 1.2 to 6.2) and 3.5-fold higher risk of post-relapse mortality, respectively.


0:02: What we realized, especially in pediatric and adolescent and young adult lymphoma and oncology, generally, is that survival outcomes keep improving and improving and improving. This is largely related to this sort of culture of clinical trials that we've created over the past, you know, 4 or 5 decades. There are populations of patients who despite all of these improvements continued to sort of lag behind on the survival curves. And, what we know is that those populations include adolescents, young adults, and also non -Hispanic, White patients always enroll. So, Black patients, Hispanic patients, and low-income patients are the populations who we really sort of need to figure out how to reach patients and those who live in rural areas are harder to reach as well. So, these are populations who you see falling behind on survival curves and also who we know, don't enroll on clinical trials.

1:05: My own research has sort of tried to get at this question using large datasets in patients with Hodgkin lymphoma is what I can use as an example. I have sort of chosen to focus on Hodgkin lymphoma because survival outcomes are so good. We are so good at treating it in both the upfront and the relapse settings. So, that's where you really start to see disparities, right, when everybody should do well. Then, survival curves differ. So, in a big analysis that we did using clinical trials data, what we saw was that there was no difference in the relapse rate, or sort of event-free survival is what we call it. For patients who are enrolled across White, Black, and Hispanic patients. Then, after relapse, when patients are removed from the study just because that's the study design, that's where we saw a real difference in survival. Black patients had a 67% survival rate post relapse versus 87% in the White patients. So, the black kids were about 3 and a half times more likely to die and Hispanic kids were about 2 and a half times more likely to die. That was very shocking to see, and then we compared it with a population-based cohort so that's like my real-world setting, which was specifically restricted to patients with Medicaid insurance. And in that population, even among the Medicaid patients, we saw significant differences in the risk of death between White and Black patients. Black patients were about 60% more likely to die.

2:44: So, there's a lot of work being done in the sort of realm of diversity, equity, and inclusion in clinical trials and clinical research. What we have been doing, you know, among my colleagues is sort of thinking about how to tackle this at multiple levels. A lot of it has to do with access-related barriers, logistic barriers, and interest barriers. One thing that just recently happened was, with the passage of the COVID Relief Bill, what got put in there was that Medicaid insurance is now required to cover the costs of clinical trials, sort of testing, which was a state-by-state mandate before. Now it's across all states, which is really exciting. So, we'll see if that sort of helps close a few gaps. We're also doing some work, talking to patients, and trying to understand sort of health belief, and how that contributes to decisions about clinical trial participation. We also just submitted a big proposal to do a study looking at implicit bias in our providers here. We're at this big, you know, huge cancer center that serves in minority underserved population in Washington Heights in New York. I think we really need to take a look at ourselves and the way we're practicing and sort of all of the health systems barriers that may be contributing to these disparities.