Childhood cancer survivors face a range of challenges long after treatment ends, and a new study sheds light on why many struggle to access consistent survivorship care—and what can help improve long-term follow-up.

In a systematic review published online on December 26 in the journal Cancer Control, researchers identified key barriers and facilitators influencing survivorship care for childhood cancer survivors (CCS). The review was led by Dr. Erin M. Mobley, a public health researcher from the University of Florida in Jacksonville, along with her colleagues.

The team analysed 49 studies that explored factors affecting survivorship care engagement. Of these, 33 focused on survivors themselves, 19 on clinicians, eight on family members, and seven on healthcare system leaders. Together, the studies painted a comprehensive picture of the structural, emotional and knowledge-based hurdles survivors often encounter.

One of the most significant barriers identified was a lack of awareness and misinformation. Many survivors and families were found to believe that survivorship care is unnecessary or simply duplicates routine medical follow-up. Emotional factors also played a major role. Some survivors actively avoided follow-up care due to lingering trauma and anxiety linked to their cancer experience, while others reported a lack of trust in healthcare providers or difficulty finding clinicians with expertise in survivorship care in their local areas.

Infrastructure-related challenges further compounded the problem. Financial hardship, inadequate or absent health insurance, difficulty scheduling appointments and unstable housing were all cited as major obstacles. The researchers found strong evidence that these systemic issues significantly limit survivors’ ability to remain engaged in long-term care.

At the same time, the review highlighted clear pathways to improving survivorship care. Providing survivors with a detailed survivorship care plan or treatment summary was shown to enhance understanding and empower patients to take ownership of their health. Strong relationships with clinicians, effective communication and better coordination across healthcare teams also emerged as powerful facilitators, helping survivors prioritise and remain connected to ongoing care.

“These findings help explain why survivorship care can be so challenging, as well as what specific factors can facilitate survivorship care engagement,” Dr. Mobley said in a statement. She added that addressing these issues could lead to better long-term health outcomes and greater peace of mind for survivors and their families.

As survival rates for childhood cancer continue to improve, experts say the focus must increasingly shift toward life after treatment. The study underscores the need for better education, stronger healthcare infrastructure and more survivor-centred approaches to ensure that childhood cancer survivors receive the long-term care they need to thrive.