Defying Determinants of Health:
One Scientist’s Mission to Improve Outcomes for Kids From Low-income Families
The researchers in the Bona Lab.
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How do social determinants of health (SDOH), things like poverty, and nutrition impact a child’s likelihood of their cancer relapsing? Read about how Kira Bona, M.D., MPH, isn’t just answering the question, but developing new interventions to help increase survival rates for children from low-income families.
PHOTOS SUBMITTED BY DR. BONA
Every parent who hears the words “your child has cancer” knows the devastating feeling of life instantly changing. In one overwhelming moment, they feel fear, love, sadness and uncertainty. This is true regardless of race, ethnicity or socioeconomic status.
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What's different – and devastating – is that a child's race and socioeconomic status can play a role in how well their treatment works. Children whose families come from Black, Hispanic, or low socioeconomic backgrounds are more likely to relapse and die than other children. Even more heartbreaking, children from low socioeconomic backgrounds are more likely to experience distressing symptoms (such as pain) at the end of life, and their parents are more likely to experience severe psychological distress.
Thankfully, pediatric oncologist, Kira Bona, M.D., MPH assistant professor at Dana-Farber/Boston Children’s is working to improve relapse and survival rates for these patients. Her research lab analyzes how social determinants of health (SDOH) such as economic stability and access to quality healthcare, impact pediatric cancer outcomes, including relapse and survival rates.
Physician-scientists in Dr. Bona’s lab have spent the last few years studying “non-traditional” risk factors like poverty. After gaining an understanding of how resource, nutritional, financial and housing disparities have the potential to influence a child’s outcome, they began developing the first tools and concepts aimed at fulfilling and supporting those needs.
Physician-scientists in Dr. Bona’s lab have spent the last few years studying “non-traditional” risk factors like poverty. After gaining an understanding of how resource, nutritional, financial and housing disparities have the potential to influence a child’s outcome, they began developing the first tools and concepts aimed at fulfilling and supporting those needs.
Eventually, using their findings and tools, the team developed a program called Pediatric Cancer Resource Equity (PediCARE), which aims to reduce food and transportation insecurity during the early months of chemotherapy to improve outcome disparities. Their initial findings suggested that increasing a family’s access to groceries and reliable transportation while their child is being treated for cancer, could have a profound impact on a child’s outcome.
Now, thanks to a partnership with another Children’s Oncology Group (COG) clinical trial, Dr. Bona is setting her sights on building the case to integrate interventions that address SDOH factors into every patient’s treatment plan.
Questioning the answer
Dr. Bona’s draw to this area of research began during her fellowship with a simple question.
“I kept hearing that because pediatric cancer protocols had been standardized, every child has the same potential for survival. My response was always – that sounds nice, but do we have the data to show this is true? And the answer was no,” Dr. Bona says.
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Disheartened by the status quo, Dr. Bona unknowingly set herself up to join a handful of researchers dedicated to building new knowledge around understanding how SDOH relates to a patient’s outcomes. And finding ways to fill those gaps for patients based on their family’s needs. “What if we could acknowledge the role that food insecurity plays in a patient's projected outcome? And alleviate that burden on their family with steady access to food. What if the next chapter of our success in delivering standardized treatments and improving outcomes with clinical trials were to add support services based on social determinants of health to ensure children successfully receive the best treatments we know how to offer and benefit from them equally?” she asks. Over the last few years, the Bona Lab has dived deep into analyzing outcomes of two clinical trials – one for kids with high-risk neuroblastoma and another for patients with acute lymphoblastic leukemia (ALL). |
Kira Bona, MD, MPH
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They examined how being insured by Medicaid or living in a high-poverty zip code affected outcomes compared to families with private insurance and those living in low-poverty zip codes.
Altogether, they studied relapse rates and survival rates of more than 900 children enrolled in the two studies. The results were shocking and heartbreaking.
Altogether, they studied relapse rates and survival rates of more than 900 children enrolled in the two studies. The results were shocking and heartbreaking.
“Children with high-risk neuroblastoma, who had Medicaid-only insurance had a 25% higher rate of relapse and were significantly more likely to die as compared to children who had private insurance — even though they received treatment on a COG clinical trial at specialized pediatric centers. This was true even after adjusting for all of the known tumor-specific risk factors,” she says.
A related finding from the ALL study, the Bona Lab found that among the group of children who experienced ALL relapse, those who lived in high-poverty zip codes were significantly more likely to relapse early, specifically 13.9% vs. 5.9% experienced early relapse. This is important because early relapse is one of the strongest predictors of our ability to put a child’s leukemia into a second remission and successfully cure them of the disease.
“As an investigator, these numbers highlight big disparities,” Dr. Bona says. “But as a physician, it’s crushing to know that on top of the hardship a cancer diagnosis already places on a family, I can recommend the best cancer treatments we have available, but I have no resources to offer them that will help their family with the things they need day-to-day so they can focus on their child's health.”
For Bona Lab scientists, the only next logical step was to design a program to provide low-income families with the basic resources every family needs and study if the additional support could improve outcomes for these patients. They wouldn't just gather data – they'd gather parents’ stories and learn about their whole experience.
“Historically, we haven’t asked parents much about how care protocols or changes to programs impact them. We wanted the parents to be viewed as research collaborators and their voices to be heard,” she says.
A related finding from the ALL study, the Bona Lab found that among the group of children who experienced ALL relapse, those who lived in high-poverty zip codes were significantly more likely to relapse early, specifically 13.9% vs. 5.9% experienced early relapse. This is important because early relapse is one of the strongest predictors of our ability to put a child’s leukemia into a second remission and successfully cure them of the disease.
“As an investigator, these numbers highlight big disparities,” Dr. Bona says. “But as a physician, it’s crushing to know that on top of the hardship a cancer diagnosis already places on a family, I can recommend the best cancer treatments we have available, but I have no resources to offer them that will help their family with the things they need day-to-day so they can focus on their child's health.”
For Bona Lab scientists, the only next logical step was to design a program to provide low-income families with the basic resources every family needs and study if the additional support could improve outcomes for these patients. They wouldn't just gather data – they'd gather parents’ stories and learn about their whole experience.
“Historically, we haven’t asked parents much about how care protocols or changes to programs impact them. We wanted the parents to be viewed as research collaborators and their voices to be heard,” she says.
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PediCARE – A bold idea that elevates parent voices and needs
Finally, in 2018, Dr. Bona launched PediCARE – a program designed to provide groceries and transportation to the hospital for families struggling to make ends meet when their child was diagnosed with cancer. Over one year, they enrolled 10 families in the PediCARE program at Dana-Farber/Boston Children’s. They asked each family to complete two surveys when their child’s treatment began and three months into receiving PediCARE services. Then they interviewed the families, asking them to share more about what worked – or didn’t – and about what would make PediCARE better. Some of Dr. Bona’s peers were skeptical that they would get truly honest answers. |
CREDIT: Canva
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“Sharing hardships isn’t easy for anyone, let alone a parent who is worrying about basic needs like food and a ride to the hospital when their child is facing a life-threatening illness,” Dr. Bona says.
But what we found was exactly the opposite. Parents opened up about their worry about getting to the clinic for chemotherapy. They were overwhelmed by staying employed so they could feed their family. Throughout everything, they were also consumed by anxiety about their child’s treatment not being successful.
“We heard how the PediCARE resources helped parents focus on their child, get rest and feel less stressed about managing appointments. We also heard how much they appreciated being asked about what was hard about their experience,” Dr. Bona says. “Their responses validated our dedication to studying whether interventions like PediCARE can help and the value of us understanding the family experience of cancer therapy.”
Dr. Bona’s team took feedback from these families and used it to refine the PediCARE intervention to better address family needs.
The next step was to answer two questions. First, could the team deliver the PediCARE program remotely, at hospitals outside of Boston? Second, would parents be comfortable participating in a randomized study of PediCARE where half would receive their home hospital’s available support and half would receive that same supportive care plus PediCARE?
If the answer to the second question was “no,” then Dr. Bona’s team would have to figure out a new way to get families PediCARE resources and study the potential for improved outcomes. There was only one way to find out.
In 2019, Dr. Bona launched the second study of PediCARE. For 2-years they followed families at Dana-Farber/Boston Children’s, and at Children’s of Alabama, under the leadership of Julie Wolfson, M.D., MSHS.
“We picked two very different sites because we wanted to see if family willingness to participate in a randomized study of PediCARE was changed in different parts of the country, and whether receiving care in a more rural state had any impact on our ability to give families PediCARE,” she says.
The 40 participating families were divided into two groups. One would receive standard hospital support. The other group would receive the same standard support plus have access to PediCARE resources including groceries delivered by an online service, and support for transportation to and from the hospital (gas cards for families with access to a car and rideshare for those without).
Dr. Bona’s optimism propels her hope
Among 40 families invited to join the PediCARE study, 100% of them agreed to participate and to be randomized, and 100% of them completed surveys at the beginning and end of the 6-month study—including the 20 families who were randomized to receive standard supportive care during that time.
As she set to publish her first PediCARE study, Dr. Bona once again focused on optimism. One of the most satisfying outcomes of the study was the financial investment the PediCARE program required.
The program costs about $7,000 per child.
“In comparison to the overall cost of caring for a child with cancer and the significant cost of new therapy development, I hope people see that this relatively small investment has the potential to significantly improve outcomes for these patients,” she says.
As part of the COG’s Diversity and Health Disparities Committee, Dr. Bona is even more optimistic that a focus on SDOH research will grow significantly in the next few years. She hopes her research will be a catalyst for conversations about what to study, why understanding SDOH is relevant to improving outcomes, for every child with cancer.
Health equity research - the next frontier in improving outcomes
Now with her initial findings and new insights from parents who participated in the PediCARE pilot program, Dr. Bona is setting her sights on seeing if PediCARE shows promise in improving outcomes by studying it among children enrolled in a trial for high-risk neuroblastoma patients.
This time, she’s teamed up with the COG’s chair of the Neuroblastoma Committee, Rochelle Bagatell, M.D. at the Children’s Hospital of Philadelphia, COG’s chair of the Patient Advocacy Committee, Jennifer Belle, and the chairs of the upcoming high-risk neuroblastoma trial, Sara Federico, M.D. at St. Jude’s Children’s Research Hospital and Thomas Cash, M.D. at Children’s Healthcare of Atlanta, who are evaluating if adding an immunotherapy treatment earlier in the patient’s care plan can reduce the risk of relapse. Together the team is eager to see what role PediCARE plays in their patients’ treatment experience.
But what we found was exactly the opposite. Parents opened up about their worry about getting to the clinic for chemotherapy. They were overwhelmed by staying employed so they could feed their family. Throughout everything, they were also consumed by anxiety about their child’s treatment not being successful.
“We heard how the PediCARE resources helped parents focus on their child, get rest and feel less stressed about managing appointments. We also heard how much they appreciated being asked about what was hard about their experience,” Dr. Bona says. “Their responses validated our dedication to studying whether interventions like PediCARE can help and the value of us understanding the family experience of cancer therapy.”
Dr. Bona’s team took feedback from these families and used it to refine the PediCARE intervention to better address family needs.
The next step was to answer two questions. First, could the team deliver the PediCARE program remotely, at hospitals outside of Boston? Second, would parents be comfortable participating in a randomized study of PediCARE where half would receive their home hospital’s available support and half would receive that same supportive care plus PediCARE?
If the answer to the second question was “no,” then Dr. Bona’s team would have to figure out a new way to get families PediCARE resources and study the potential for improved outcomes. There was only one way to find out.
In 2019, Dr. Bona launched the second study of PediCARE. For 2-years they followed families at Dana-Farber/Boston Children’s, and at Children’s of Alabama, under the leadership of Julie Wolfson, M.D., MSHS.
“We picked two very different sites because we wanted to see if family willingness to participate in a randomized study of PediCARE was changed in different parts of the country, and whether receiving care in a more rural state had any impact on our ability to give families PediCARE,” she says.
The 40 participating families were divided into two groups. One would receive standard hospital support. The other group would receive the same standard support plus have access to PediCARE resources including groceries delivered by an online service, and support for transportation to and from the hospital (gas cards for families with access to a car and rideshare for those without).
Dr. Bona’s optimism propels her hope
Among 40 families invited to join the PediCARE study, 100% of them agreed to participate and to be randomized, and 100% of them completed surveys at the beginning and end of the 6-month study—including the 20 families who were randomized to receive standard supportive care during that time.
As she set to publish her first PediCARE study, Dr. Bona once again focused on optimism. One of the most satisfying outcomes of the study was the financial investment the PediCARE program required.
The program costs about $7,000 per child.
“In comparison to the overall cost of caring for a child with cancer and the significant cost of new therapy development, I hope people see that this relatively small investment has the potential to significantly improve outcomes for these patients,” she says.
As part of the COG’s Diversity and Health Disparities Committee, Dr. Bona is even more optimistic that a focus on SDOH research will grow significantly in the next few years. She hopes her research will be a catalyst for conversations about what to study, why understanding SDOH is relevant to improving outcomes, for every child with cancer.
Health equity research - the next frontier in improving outcomes
Now with her initial findings and new insights from parents who participated in the PediCARE pilot program, Dr. Bona is setting her sights on seeing if PediCARE shows promise in improving outcomes by studying it among children enrolled in a trial for high-risk neuroblastoma patients.
This time, she’s teamed up with the COG’s chair of the Neuroblastoma Committee, Rochelle Bagatell, M.D. at the Children’s Hospital of Philadelphia, COG’s chair of the Patient Advocacy Committee, Jennifer Belle, and the chairs of the upcoming high-risk neuroblastoma trial, Sara Federico, M.D. at St. Jude’s Children’s Research Hospital and Thomas Cash, M.D. at Children’s Healthcare of Atlanta, who are evaluating if adding an immunotherapy treatment earlier in the patient’s care plan can reduce the risk of relapse. Together the team is eager to see what role PediCARE plays in their patients’ treatment experience.
However, like all pediatric cancer researchers, Dr. Bona is anticipating spending a significant amount of time completing grant applications. And because research to support intervening on SDOH rarely falls within funding priorities for grantmakers, she’s going to be leaning on investments from the community.
“We have the philanthropic support we need to get started, but this is a five-year research project. The pediatric cancer community is incredibly generous and they see the need for a whole-child, whole-family approach to treatment,” she says. “Finding funding is what keeps me up at night and pulls us away from doing the work. Donors are crucial and any support they provide accelerates the difference we can make for patients.”
By partnering with a large COG trial, Dr. Bona also hopes to show researchers across diseases that it is possible to intervene to address SDOH rather than simply describe disparities – and that if we work together to test interventions like PediCARE in the next decade we will be able to look families in the eye and tell them that we have supportive care programs to help get their child and family through therapy that actually work to improve outcomes.
“Disparities that we and others have demonstrated tell us very clearly that new drugs are simply not enough if our goal is to cure every child. ” Dr. Bona says. “My hope is this study will lay the groundwork for new treatment approaches that include supportive care resources. My hope is that we can celebrate fewer relapses and that parents can spend time holding and loving their children throughout this difficult experience.”
“We have the philanthropic support we need to get started, but this is a five-year research project. The pediatric cancer community is incredibly generous and they see the need for a whole-child, whole-family approach to treatment,” she says. “Finding funding is what keeps me up at night and pulls us away from doing the work. Donors are crucial and any support they provide accelerates the difference we can make for patients.”
By partnering with a large COG trial, Dr. Bona also hopes to show researchers across diseases that it is possible to intervene to address SDOH rather than simply describe disparities – and that if we work together to test interventions like PediCARE in the next decade we will be able to look families in the eye and tell them that we have supportive care programs to help get their child and family through therapy that actually work to improve outcomes.
“Disparities that we and others have demonstrated tell us very clearly that new drugs are simply not enough if our goal is to cure every child. ” Dr. Bona says. “My hope is this study will lay the groundwork for new treatment approaches that include supportive care resources. My hope is that we can celebrate fewer relapses and that parents can spend time holding and loving their children throughout this difficult experience.”