Adolescents and young adults (AYAs) diagnosed with cancer are facing significant challenges that set them apart from younger children and older adults, according to researchers at Columbia University. Despite advances in overall cancer survival rates, this group—defined as those between 15 and 39 years old—has not seen the same improvements in outcomes.
Melissa P. Beauchemin, PhD, MSN, BSN, BA, CPNP-PC, CPON, FAAN, an assistant professor of nursing at Columbia University and vice-chair for cancer care delivery research in the Children’s Oncology Group (COG), highlighted the unique difficulties faced by AYAs. She explained that these patients often fall through the cracks of pediatric and adult oncology systems. “For years, data showed that AYAs weren’t experiencing the same improvements in cancer outcomes that younger children and older adults were. Pediatric cancer is one of the great success stories of modern medicine—survival rates have improved dramatically over the last 50 years (Pediatrics). But adolescents and young adults were falling through the cracks, with lower survival, fewer clinical trial opportunities, and unique challenges related to care,” said Beauchemin.
Many AYAs are navigating major life transitions such as starting college or new careers when they receive their diagnosis. This disruption is compounded by logistical hurdles like insurance issues or long commutes for treatment. Researchers note that timely access to guideline-based care is less common for this group; they also enroll less frequently in clinical trials compared to other age groups.
Beauchemin noted that health equity remains a pressing concern: “From a health equity lens, the AYA population is especially vulnerable to gaps in care, financial hardship, and long-term survivorship issues. AYAs who come from lower-income backgrounds or who are part of racial or ethnic minority groups are even more likely to fall through the cracks. Add in language barriers, immigration status, or insurance instability, and the risk doubles.”
She emphasized how financial hardship manifests differently for these patients: “You have these young adults who were just getting started in life—maybe they’re in college or early in their careers—and suddenly they can’t work; they lose insurance; or they’re hit with massive out-of-pocket costs… Then there are patients already living with material hardship—using SNAP benefits or Medicaid—whose cancer journey is shaped by long-standing social challenges.”
A further issue is what Beauchemin described as “time toxicity,” where time spent commuting for treatment leads to missed work shifts and loss of wages—a particular problem for those without paid leave.
Columbia researchers are addressing these problems by developing targeted interventions such as financial navigation programs tailored specifically for AYAs. As Beauchemin explained: “Yes, a major focus of my research is developing and testing financial navigation interventions for AYAs with cancer… During my postdoctoral training…, we interviewed AYAs with cancer and used this information to adapt an adult-focused model to address the unique needs of AYAs… Now—with support from an NIH grant—we’ve launched a randomized clinical trial with 80 AYAs—we just began recruitment after receiving IRB approval.”
The intervention uses both digital tools like FindHelp.org—which connects users to local resources—and personalized phone-based support provided by case management services specializing in medical financial hardship.
Efforts at Columbia also include strategies supported by grants such as EQUIP to improve screening for financial toxicity among AYA patients at NewYork-Presbyterian Hospital. The goal is twofold: identify those at risk early on and intervene effectively.
Survivorship presents another challenge since many AYA patients do not continue into follow-up care due to psychological barriers or logistical obstacles like lack of time off work or loss of insurance coverage after treatment ends. In interviews conducted during recent studies led by Beauchemin’s team, survivors reported wishing someone had discussed survivorship care earlier during their treatment process.
Progress has been made at Columbia University Medical Center where a dedicated oncology financial navigation program now operates within its hospital system: “There’s now an oncology financial navigation program at our hospital with full-time staff focused on medical billing and co-pays,” said Beauchemin.
According to her research team’s findings: “What’s exciting is that our research is starting to influence systems—how we screen; how we triage patients; how we think about equitable care delivery… Instead of matching patients to therapy based on biomarker[s], we’re matching them [to] interventions based on their social phenotype—their needs vulnerabilities[,]and life circumstances.”
These initiatives form part of broader efforts underway at Columbia’s Herbert Irving Comprehensive Cancer Center—including programs aimed at turning laboratory discoveries into advanced treatments as well as training future generations of clinicians—to address persistent disparities faced by adolescent and young adult cancer patients.
