A new study shows that childhood cancer survivors who engage in long-term survivorship programs and receive a personalized survivorship care plan live longer than those who do not.
Xu Ji, PhD, MSPH
A new study led by researchers at Winship Cancer Institute of Emory University and Children’s Healthcare of Atlanta shows that childhood cancer survivors who engage in long-term survivorship programs and receive a personalized survivorship care plan (SCP) live longer than those who do not.
Published in the Journal of the National Cancer Institute, the research provides the first evidence that survivorship care plans, when integrated into comprehensive pediatric survivorship programs, are associated with significantly improved survival. The multidisciplinary study was co-led by Sharon M. Castellino, MD, MSc, professor and pediatric oncologist at the Aflac Cancer and Blood Disorders Center of Children’s Healthcare of Atlanta and researcher at Winship Cancer Institute.
“Our study shows that when childhood cancer survivors are engaged in survivorship care through tools like a survivorship care plan, they experience better overall and event-free survival,” says lead author Xu Ji, PhD, MSPH, researcher at Winship Cancer Institute and associate professor in the Department of Pediatrics at Emory University School of Medicine and the Aflac Cancer and Blood Disorders Center of Children’s Healthcare of Atlanta. “This underscores how critical survivorship care is for supporting the long-term health and well-being of survivors.”
Study overview – challenging previous assumptions
Sharon Castellino, MD, MSc
The research team followed 3,366 childhood and adolescent cancer survivors diagnosed between 2002 and 2016 who were eligible for a survivorship program at a comprehensive pediatric cancer center, tracking outcomes for up to 10 years.
Just over half of patients studied (55.9%) received a survivorship care plan (SCP), a personalized document that summarizes diagnosis and treatment history and outlines recommended screenings, late-effect monitoring, and healthy-living guidance.
Those who received an SCP had a 38% lower risk of death over 10 years compared with those who did not. Survivors with multiple survivorship visits and SCP updates experienced even greater survival benefits.
When cause of death was examined, SCP recipients were less likely to die from relapse, treatment complications, or external causes than survivors who never received a plan.
Previous studies have suggested that SCPs might improve survivors’ knowledge or adherence to recommended follow-up care, but they had not shown a direct link to survival. This new research challenges the perception that SCPs are simply paperwork.
“This is the first large, contemporary, and diverse cohort study to link SCP receipt within a pediatric cancer survivorship program to improved survival,” says Ji. “Our findings show that these plans are far more than administrative documents. They can save lives when embedded in comprehensive survivorship care.”
“This work demonstrates the importance of quality and accessible survivorship care and responds to the CDC’s call for evidence that survivorship care plans are an important tool for patients as they transition out of cancer treatment,” says Castellino. “In childhood survivors this is particularly important as they may be at risk for late effects of treatment; but with quality care after transition from oncology they can have effective screening and secondary prevention leading to decades of good health.”
Equity and access
Researchers also found that SCP engagement was not uniform across demographic or clinical groups. Survivors who were older, identified as non-Hispanic Black, or had central nervous system tumors or surgery-only treatment were less likely to receive an SCP, highlighting opportunities to address disparities in survivorship care access.
“Long-term survival after childhood cancer is not only about the cure itself, but about sustained, coordinated care,” Ji adds. “Families can have confidence that engaging in survivorship programs can make a real difference in their future health.”
Next steps
The team plans to continue tracking survivors beyond 10 years, examine quality of life alongside survival, and explore web-based platforms to help survivors and clinicians access SCPs nationwide. One such platform is Cancer SurvivorLink, developed by coauthor Jordan Marchak, PhD, ABPP, professor and co-director of the Aflac Survivor Program at the Aflac Cancer and Blood Disorders Center of Children’s Healthcare of Atlanta and researcher at Winship Cancer Institute.
This research builds on a history of survivorship studies at the Aflac Cancer and Blood Disorders Center and Winship Cancer Institute, both nationally recognized leaders in improving the quality and length of life for children with cancer.
The multidisciplinary study team included researchers from Winship Cancer Institute, the Aflac Cancer and Blood Disorders Center of Children’s Healthcare of Atlanta, and Emory University’s School of Medicine and Rollins School of Public Health.
This work was supported in part by the Centers for Disease Control and Prevention (Award SIP 20-004; Cooperative Agreement U48DP006377), the National Cancer Institute (R50CA285492) and the National Institute on Minority Health and Health Disparities (K01MD018637). The findings and conclusions are those of the authors and do not necessarily represent the official positions of the CDC or the NIH.