Leveraging Community-Academic Partnerships to Improve Care for Latinx AYA Cancer Survivors With Stephanie Smith, MD

Oncology Data Advisor: Welcome to Oncology Data Advisor. Today, we're here at the ASCO Annual Meeting, and I'm joined by Dr. Stephanie Smith. Thank you so much for coming on today.

Stephanie Smith, MD: Thanks for the invite.

Oncology Data Advisor: Would you like to introduce yourself and share what your work focuses on?

Dr. Smith: Absolutely. My name is Stephanie Smith. I'm a Pediatric Oncologist and Cancer Survivorship Researcher at Stanford. My research focuses on the intersections between oncology treatment, survivorship, and health equity, looking at it through the lens of how we can try to improve implementation of science into real-world practice to really start to tackle health disparities, ideally partnership with community organizations.

Oncology Data Advisor: Great. So, you're presenting here about leveraging a community-academic partnership to evaluate the needs of Latinx AYA cancer survivors. Just for a little bit of background, why is studying cancer survivorship important in the context of adolescents and young adults, as well as the Latinx population?

Dr. Smith: Folks who are treated for cancer when they're little are unfortunately at risk for long-term health complications related to their past cancer treatments as they get older. That's related to being treated with things like chemotherapy and radiation therapy that are necessary to cure the cancer, but set people up for late health effects, or at least the risk of late health effects. We know from decades of research that staying connected with care is really important for these individuals, particularly as they move from pediatric to adult-focused care. That's where the adolescent and young adult age group becomes super important.

We think about AYAs as being a vulnerable population in cancer in general, and that's particularly true in the survivorship population as well. We know there's so much fragmentation of care, and as people are aging out of pediatric health systems, many are lost to follow up and never make it to establish good survivorship care with adult clinicians. There's a lot of talk about self-management and about trying to empower folks to man their own health care and manage their own health care and drive that. But that becomes much more difficult when you face a variety of different factors.

One of these factors that we think about with some of the patients we take care of is language. If you imagine a kid who is diagnosed and treated when they are really little, say two or three, who goes through a few years of cancer treatment and is done with that, they're not necessarily an active member of their treatment team at that age. We bond with and care deeply for the kids that we treat, but the reality is that a four-year-old isn't making their own treatment decisions. Fifteen or 20 years after they finish their treatment, now they're a teenager or a young adult, and they're the ones who need to start to make their own health care decisions. That should ideally happen gradually over years through what should be a well–thought-out transition process.

That's a long way of saying that this becomes much more complicated for folks whose language preferences may be different from the dominant language in the population. An example in the population that I've been working closely with is the Hispanic, Latino, or Latinx cancer survivors, and thinking about individuals who perhaps grow up being bilingual and speaking both English and Spanish, but whose parents may be monolingual Spanish–speaking or primarily Spanish–speaking preferred. The question becomes, how do you facilitate some of these conversations when a child has aged throughout their pediatric cancer follow-up?

At some point, those conversations really shift from being driven by and directed to the parent, oftentimes with an interpreter in settings in which the clinician is not fluent in the parent's preferred language, having an interpreter present for those visits. But as a kid becomes a teenager and a young adult, if they grew up bilingual, oftentimes they'll prefer to speak in English. Then as they get older and more independent, those conversations shift into more of a dyad between the clinician and the young adult. There are settings where the parent then, in an informal way, isn't a part of those conversations very naturally. One of the things that becomes problematic is thinking about how to facilitate that communication when there are differences in language in these different settings. That's a long-winded way of explaining the complexities for these patients.

Oncology Data Advisor: Yes, thank you. It's obviously a very complex area with a lot of different factors to address. Why did you decide to focus on community-academic partnerships in addressing this?

Dr. Smith: I think one of the things that consistently comes up in every national cancer survivorship meeting for the past handful of years is really saying, "We know what the science tells us. We know that people should be getting long-term follow-up. They should be getting all of these well–thought out recommendations that are based in the evidence." But the reality in clinical practice is that less than 20% of folks are actually getting this care, and it's probably much lower in the real world.

The model of having cancer survivorship clinics that reside solely within the academic setting is the model that has naturally developed over the years, and it has its advantages, for sure. But the reality is that it's not reaching a bunch of people. The question is, how do we start to reach those folks? I think the answer lies in developing these partnerships between the academic and the community settings to think about wraparound services, to think about meeting people where they truly are, where they live and work, and not just where they have to drive sometimes hours and hours to get to an academic center.

The way that I think about it is, what can we borrow from really good science that lives within the public health sphere, in terms of a robust body of literature that focuses on community-based participatory research and community partnerships, and bring that into oncology and survivorship and learn from what folks have done for decades in different marginalized populations? To not come in just as a scientist or a clinician or an academician who sort of knows it all, but to say, "We actually don't know. What we know is what the science tells us and what the studies tell us, but we don't know the realities on the ground in your community with your people." The way that we start to break down some of these barriers is to go at this together through true, equal partnerships that are meant to approach this with a lot of humility.

Oncology Data Advisor: Absolutely, yes. What were some of the key findings that your study found?

Dr. Smith: This was an early needs assessment, really broad-based. We interviewed adolescent and young adult cancer survivors, parents of childhood cancer survivors, and then a number of individuals who work with community organizations. We found one of the really prominent themes is profound unmet mental health needs in the decades after someone finishes their cancer treatment. One of the examples is that parents have really, really prolonged fear of recurrence for their children. Even for diagnoses where, let's say it's 15 or 20 years out and the chance of relapse is diminishingly small, that fear remains just as high as it ever was. We know that there are unmet mental health needs for adolescent and young adult cancer survivors, and even for their siblings as well. There's a magnitude of impact on a family.

One of the other key findings has to do with communication barriers—not just your standard language preference barriers that we see when clinicians speak or prefer different languages from families, but really some nuances of differing language preferences within families as well. There are barriers impeding some of the communication about cancer and survivorship within a family, between the young adult and a parent, between young adults and clinicians, and then between parents and clinicians. It's sort of this triad that I like to think about in terms of levels of different factors that may be targets for future interventions there.

Oncology Data Advisor: Great. What recommendations do you have for improving survivorship for this population, including utilizing the results of your study?

Dr. Smith: What we're planning to do for the next step in our research, which is funded by the Conquer Cancer Career Development Award and is going to start this summer, is doing a deep dive into the language needs and communication preferences and starting with really listening to the community first. We'll be doing focus groups and listening deeply to all of the nuances of language and communication, in particular in the Hispanic and Latino culture.