Pediatric oncologist’s passion to ‘improve access to care for all’ drives research focus
The NIH and NCI awarded a $4 million grant to Paula Aristizabal, MD, MAS, to expand a pilot program aimed at increasing diverse participation in pediatric cancer clinical trials.
Aristizabal, pediatric oncologist at Rady Children’s Hospital and an associate professor of pediatrics in the division of pediatric hematology and oncology at University of California San Diego, and Moores Cancer Center, is the principal investigator for the Childhood Malignancy Peer Research Navigation (COMPRENDO) program. The program involves a tailored peer-navigation intervention aimed at improving clinical outcomes equitably for individuals from all races and ethnicities, so they may benefit equally from cancer discoveries and therapies for cancer.
With this new grant, Aristizabal plans to expand her efforts to sites in Boston, San Francisco and Birmingham, Alabama.
“As a Hispanic physician-scientist, I have witnessed firsthand the disparities in access to cancer care, particularly among our minority populations,” Aristizabal said during an interview. “It is important for me to improve access to care and provide the same opportunities to all children with cancer, regardless of their background. This is my mission for my academic career and my passion.”
Aristizabal spoke with Healio about her plans for the grant, her ultimate hope for the work she is doing and her advice for other women in the field.
Healio: Why is it so important to address disparities in pediatric cancer care?
Aristizabal: It is extremely important to address disparities in pediatric cancer care, because pediatric cancer is highly curable, but unfortunately, over the past decade we have seen that access to care, treatment and outcomes are not the same for all populations in the United States.
There is a lot of data, including our own data at Rady Children’s Hospital and UC San Diego, that show Hispanic children with cancer have higher incidence for certain cancer types, such as leukemia and lymphoma, but they have poorer survival outcomes.
We need to change this. Hispanic children with cancer deserve to have the same opportunities as non-Hispanic white children to achieve the same cure rates.
Even though we have access to clinical trials that have shown improved outcomes, our Hispanic children with cancer are not represented in these clinical trials in the same proportion as non-Hispanic white children. There are many areas of intervention where we can address these disparities gaps and achieve equity for all children.
Healio: What is the aim of the COMPRENDO program?
Aristizabal: COMPRENDO is a peer navigation intervention to improve informed consent outcomes in children with cancer so that they have the opportunity to participate in a clinical trial.
This intervention involves a parent navigator with the lived-experience of having a child with cancer and has been trained in clinical trials. The parent navigators have the expertise of having undergone cancer treatment as a family and are therefore able to educate other parents of children diagnosed with cancer so that they can help them navigate the clinical trials and the health care system.
This intervention was informed by qualitative and quantitative research that we conducted in close to 300 parents at Rady Children’s Hospital UC San Diego, where we asked parents how to make the process of clinical trials better. We have learned from parents that even though they appreciate their oncologist very much, understanding the general concept of a clinical trial is difficult for them. Our informed consent for clinical trials are about 30 pages long with very jargony language — they are very difficult to understand even for highly educated individuals.
The lingo is very difficult to digest, particularly when just being told that your child has cancer. It is a moment when parents are absolutely overwhelmed with the devastating disease diagnosis.
In addition to digesting the diagnosis, imagine trying to grasp what a clinical trial entails. They told us that they need someone, a layperson, to sit down with them and explain in very plain language, what a clinical trial is. After performing the qualitative and quantitative research with the parents at Rady Children’s Hospital, we designed the intervention, which was co-created with parents. It was a wonderful opportunity for me to work with our parents to understand their perspective and create something that was truly helpful for them.
For me, one of the main lessons I have learned along the way is to listen to the community members that we are serving, which in this case is the parents of children with cancer and specifically Hispanic parents. They were desperately asking for a Spanish speaking navigator and so we found one and we trained that person and now she provides absolutely awesome care for these families as part of our research program.
Healio: What are your research plans with the NIH/NCI grant?
Aristizabal: I initially received funding for Curebound, our awesome regional foundation in San Diego that supports local research in cancer. I later obtained funding from NCI to develop the intervention and implement it at Rady Children’s Hospital and UC San Diego for all of our children with cancer — regardless of their background. That was the first step to prove that the intervention was effective. We were able to improve comprehension of informed consent and we were able to improve decision-making abilities with our parents.
The next step is to test the intervention on a larger scale, and I chose to partner with Boston Children’s Hospital, UC San Francisco Children’s Hospital and University of Alabama Children’s Hospital to test the intervention at these sites.
We are focusing on Hispanic children with cancer because even though we demonstrated that this intervention is effective for everyone, regardless of their background, it had more of a significant impact on our Hispanic individuals who use Spanish for medical communication. In order to achieve equity, we need to focus the intervention to improve outcomes in these underserved minority populations. The ultimate goal is to prove the intervention is effective at other sites and then start to disseminate it among other populations, other cancer types and other age groups. My goal is to also be able to implement it among other minority populations, including Black children.
Healio: Can you offer advice to other women in oncology who may want to create a similar program?
Aristizabal: Women in oncology bring a very important and unique perspective to the oncology field. This field has traditionally involved male physician-scientists in the past, but I have been very happy to see the surge of female physician-scientists and specifically female minority physician-scientists — I am very proud of that.
My advice to other women in the field is to follow your passion. Knock on every possible door.
With this grant, I submitted the request for funding to different foundations and Curebound and NCI were extremely interested in funding this type of research.
Ten years ago, I wouldn’t have imagined the impact of these interventions that we developed here at Rady Children’s and UC San Diego. I remember telling my mentor at the time that I really wanted to work with our Hispanic population and she said that she saw my passion and to start working hard to create something that will be impactful — and here we are. So, follow your passion and try to find something that helps those in the community that you serve.
For more information:
Paula Aristizabal, MD, MAS, can be reached at paristizabal@rchsd.org.
Collapse
Healio Interviews
Read more about