September 2024
Cancer care for children and young adults has come a long way, but there are still significant hurdles to overcome, especially for underserved populations. Xu Ji, PhD, a health services researcher at the Aflac Cancer and Blood Disorders Center of Children's and the Department of Pediatrics at Emory University, has been tackling these challenges head-on. Dr. Ji seeks to understand the access to quality and disparities in health care services for underserved populations with complex chronic diseases like cancer. Her research dives deep into how different factors like healthcare access, insurance coverage, and social conditions affect patients with or surviving pediatric, adolescent, and young adult (AYA) cancers and their long-term outcomes.
Dr. Ji’s research focuses on three specific areas:
1. Health Insurance Issues in Pediatric and AYA Oncology
One major focus of Dr. Ji’s work is understanding how insurance coverage influences cancer care. One specific research question Dr. Ji wants to answer is, “how does the timing of insurance enrollment and continuity of health care coverage influence outcomes for pediatric and AYA cancer care patients from the time of prevention to symptoms onset through early detection and timely diagnosis, and to timely initiation of treatment and quality of treatment, and during the survivorship phase?” Dr. Ji’s been involved in a project funded by the Leukemia and Lymphoma Society where she’s conducting a secondary data analysis of multi-state populations that looks at how Medicaid coverage affects outcomes for kids with blood cancers like leukemia and lymphoma.
There are three main patterns of Medicaid coverage: continuous coverage (where a patient has Medicaid before and after diagnosis), newly gained Medicaid (where coverage starts around the time of diagnosis), and non-continuous coverage (where coverage fluctuates). Dr. Ji’s hypothesis states kids with continuous Medicaid coverage tend to have better survival rates than those with newly gained or non-continuous coverage. This underscores the importance of uninterrupted coverage for catching and treating cancer early. Unfortunately, many uninsured patients do not actually receive Medicaid coverage until the point of or after their cancer diagnosis.
Dr. Ji compared these findings with data from the Aflac Cancer and Blood Disorder Center and found similar patterns on a local level. This reinforces the need for consistent Medicaid coverage to improve outcomes. This research has generated two manuscripts that were recently accepted for publication in JCO Oncology Practice and JNCI, respectively.
2. Health Disparities and Social Determinants of Health in Pediatric Oncology
Dr. Ji’s research also digs into how social factors like socioeconomic status, race, and location affect cancer care. Families with fewer resources often struggle to maintain continuous insurance coverage and access the medical care they need, which can lead to delayed diagnoses and poorer outcomes. Survivors of pediatric cancer often face ongoing health issues from their treatments. Addressing these issues means not just providing medical care but also supporting survivors through financial and social challenges.
Dr. Ji is currently leading a two-year grant funded by the Rally Foundation for Childhood Cancer Research to systematically assess structural racism and its impact on patients with pediatric cancer. While much of the literature has described differences in pediatric cancer survival based on individual-level factors, this project is the first to delineate community-level social determinants of health – structural racism and racial segregation – and to explore how these factors create and perpetuate disparities in health and healthcare after pediatric cancer.
3. Healthcare Experience and Barriers Faced by Longer-term Survivors of Childhood Cancer
In another ongoing project, an NIH-funded K01 award, Dr. Ji strives to understand the experiences of adult survivors of childhood cancer within the Medicaid system. Through interviews with survivors and healthcare providers, Dr. Ji aims to uncover the obstacles that make it hard for survivors to get high-quality care. This includes issues with insurance, financial hardship, and care coordination. The goal is to use these insights to develop better support systems and educational programs for healthcare providers. This will help them better assist survivors navigating the Medicaid system. Another goal is to develop a large-scale survey to understand survivors’ experience with Medicaid insurance, such as their perceived barriers to enrollment, their own knowledge about Medicaid policies, and their experience with health care when they're in the Medicaid system.
Dr. Ji’s findings highlight some crucial issues in cancer care for young people. The research shows that continuous insurance coverage is vital for better survival rates and that social and financial factors play a huge role in treatment outcomes. Addressing these disparities requires a combination of policy changes, better healthcare access, and robust support systems for survivors. Dr. Ji’s work offers a valuable perspective on the challenges facing young cancer patients and their families. By focusing on healthcare access, insurance coverage, and long-term survivorship, she’s helping to pave the way for more equitable and effective cancer care. As we move forward, her research will continue to be a key resource in shaping better policies and practices for pediatric oncology. Dr. Ji hopes her research will generate evidence to inform policies, clinical practices, and interventions that are designed to enhance the quality and outcomes of pediatric and AYA cancer care.