Disparities Observed in Follow-up Care Among Young Adult Childhood Cancer Survivors

Get Permission

A research team examined gaps and disparities in lifelong follow-up among childhood cancer survivors, including taking a closer look at long-term follow-up care plans, specifically for underserved populations. Their study showed that age and ethnic background are associated with inadequate follow-up care among young adult childhood cancer survivors; Hispanic and older survivors were significantly less likely to receive a recent follow-up care visit. These findings were published in JNCI Cancer Spectrum by Milam et al.

Treatments for childhood cancers have been increasingly successful, with a greater than 80% 5-year survival rate. However, there are numerous, lifelong risks that appear in the years following treatment. Thus, life-long surveillance is needed to prevent and reduce the severity of treatment-related late effects. Unfortunately, as survivors age, and their risk for late effects increases, engagement in survivorship care decreases.

“Long-term follow up care is essential for managing the health of young cancer survivors, and with growing numbers of cancer survivors, greater efforts are needed to increase health-care engagement as survivors age, and to minimize ethnic disparities in access,” said first study author Joel Milam, PhD, Professor of Epidemiology and Biostatistics at the University of California, Irvine Program in Public Health. “We recommend stronger tactics for reaching survivors including patient and provider education, written treatment summaries, and standardized plans for transitioning survivors from the pediatric to adult care settings.”

Study Methods

To conduct their study, the research team formed a study cohort they coined Project Forward and invited over 2,000 childhood cancer survivors to participate who were sourced from a Los Angeles County cancer registry. They enrolled 1,166 participants in their cohort who had been diagnosed with any cancer at stage II or more advanced (except for brain cancer and melanoma, which included stage I or more advanced) between 1996 and 2010 and were now in their mid-20s or mid-40s.

We found that if our participants had insurance, a receipt of a written treatment summary, and discussions with their physician about long-term care needs, they were at greater odds of utilizing long-term follow-up care.
— Joel Milam, PhD

Tweet this quote

Self-reported surveys were received from a range of sociodemographic backgrounds about a variety of information, including age, race/ethnicity, insurance coverage, indicators of health-care engagement, ability to manage one’s health, family influence, and mental health.


“We found that if our participants had insurance, a receipt of a written treatment summary, and discussions with their physician about long-term care needs, they were at greater odds of utilizing long-term follow-up care,” Dr. Milam added. “Unfortunately, we also saw that older Hispanic [patients] and other ethnic groups were associated with lower odds of recent care, putting them at risk for future health complications.”

Another health-care gap that the researchers highlighted was that more than half of the survivors had never received a written cancer treatment summary. Only 12% of the respondents reported that they received all the long-term care components that were assessed, indicating a need for improvements in delivering the full spectrum of survivorship care.

The research team is planning to continue their research and investigation of sociocultural factors (eg, culturally based beliefs about disease, language, understanding of insurance, and neighborhood resources).

The study authors concluded, “Age and ethnic disparities are observed in receipt of follow-up care among young adult childhood cancer survivors. Potential intervention targets include comprehensive, ongoing patient education, provision of written treatment summaries, and culturally tailored support to ensure equitable access to and utilization of care.”

Disclosure: This work was supported by the National Institute on Minority Health and Health Disparities of the National Institutes of Health and the National Cancer Institute. For full disclosures of the study authors, visit

The content in this post has not been reviewed by the American Society of Clinical Oncology, Inc. (ASCO®) and does not necessarily reflect the ideas and opinions of ASCO®.