Why Do Childhood Cancer Survivors Not Receive Essential Follow-up Care?

Many childhood cancer survivors do not receive essential follow-up care, and researchers from the Keck School of Medicine of USC and the University of Florida College of Medicine – Jacksonville have published a review in the journal Cancer Control to identify why.

By analyzing 49 studies that explored barriers and facilitators to care, the team sought to address a critical gap in the health care system where 85% of U.S. children diagnosed with cancer survive at least five years, yet many face significant long-term health risks without proper monitoring.

Main data that support the findings

The research highlights a growing population of more than half a million survivors in the United States who must manage unique health challenges following treatment at a young age. While improved therapies have bolstered survival rates, these data show that nearly one-third of childhood cancer survivors develop severe, life-threatening or fatal health problems 20 years after their initial diagnosis. These complications can include an increased risk for new cancers in later life as well as issues involving the heart, lungs and brain.

To investigate why many patients miss out on recommended screenings, the research team screened 8,585 publications. The final analysis revealed that although the Children’s Oncology Group and the National Cancer Institute provide clear guidelines for survivorship care, multiple factors prevent these guidelines from being followed.

The study identified health system barriers as a primary obstacle. Because children with cancer are typically treated by pediatric oncologists in children’s hospitals, they must transition to new providers as they age. Researchers found that many general practitioners do not have survivorship care on their radar, leaving them unsure of how to screen adult survivors of childhood cancer or what specific tests to order.

“The guidelines are clear: Survivorship care is important. But in many cases, care does not occur, and our study combines evidence from many sources to explain why,” said Susanne Hempel, professor of clinical population and public health sciences at the Keck School of Medicine and director of the Southern California Evidence Review Center, who oversaw the review, in a news release announcing the findings.

Personal and emotional factors also play a significant role in why survivors do not receive care. The review found that some survivors lack knowledge about the importance of follow-up care or hold inaccurate beliefs that such care is unnecessary. For others, the barrier is psychological. Emotional trauma or distress related to their early experience with cancer can lead patients to actively avoid medical environments.

“One thing we see is that some patients know they should get aftercare, but they don’t want to be reminded about their illness,” Hempel said. “They see it as a chapter that is closed — and new appointments bring back memories of a painful time in their lives.”

The research team identified several facilitators that could improve access and engagement. Key solutions include:

• Integrating survivorship care plans into electronic health records and standardizing insurance reimbursement.
• Adding survivorship guideline training to medical school curricula so general practitioners are better prepared.
• Providing patients with a clear treatment summary and care plan before they leave pediatric care.
• Utilizing peer mentorship programs and care navigators to help young adults transition from pediatric to adult systems.
• Implementing shared decision-making tools that allow patients, caregivers and providers to build care plans together.

“These findings help explain why survivorship care can be so challenging, as well as what specific factors can facilitate survivorship care engagement,” said Erin Mobley, assistant professor at the University of Florida College of Medicine – Jacksonville and the study’s first author, in the news release. “Ultimately, this work can help promote better long-term outcomes and greater peace of mind for survivors and their families.”

The review concluded that while researchers have identified many factors as barriers or facilitators, most survivors still do not receive recommended care. New research building on these findings may help raise awareness and make survivorship care more accessible and easier to scale.

Editor's note: This article is for informational purposes only and is not a substitute for professional medical advice, as your own experience will be unique. Use this article to guide discussions with your oncologist. Content was generated with AI and reviewed by a human editor.

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