Major review highlights barriers to follow-up care for childhood cancer survivors

Thanks to improved therapies, 85% of U.S. children diagnosed with cancer now survive at least five years, with more than half a million survivors in the country today. But this group faces a unique set of challenges after getting cancer treatment at a young age—including an increased risk for new cancers later in life, as well as heart, lung, brain and other complications. Twenty years after diagnosis, nearly one-third of childhood cancer survivors have severe, life-threatening or fatal health problems.

Survivorship care addresses these issues by screening for common health problems and treating them early. These programs also promote overall wellness with a variety of resources, including mental health care, guidance for healthy living and help navigating the health care system. The Children’s Oncology Group and the National Cancer Institute offer clear guidelines on survivorship care, but many childhood cancer survivors never receive it.

To understand why, a team of researchers led by the Keck School of Medicine of USC screened 8,585 publications on survivorship care and closely analyzed 49 that studied barriers and facilitators to care. They found a range of reasons, including a lack of providers with specialized knowledge and survivors avoiding care due to trauma or emotional distress. The review was just published in the journal Cancer Control.

“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, PhD, 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.

The review team included experts from the Southern California Evidence Review Center and the Southern California Center for Young Adult Cancer Survivorship Research, centers based at USC that focus on evaluating health care evidence and improving outcomes for young cancer survivors. Together with researchers from the University of Florida College of Medicine – Jacksonville, they have pinpointed several key ways to overcome challenges and improve access to survivorship care.

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

Health system barriers

Several barriers to survivorship care stem from gaps within the health care system. For example, children with cancer are treated by pediatric oncologists in children’s hospitals. After recovery, they must seek follow-up care from a different provider—but it’s often unclear where to turn. 

“This isn’t on the radar of most general practitioners, so they don’t know how to screen adult survivors of childhood cancer or what to test for,” Hempel said.

Adding training on survivorship guidelines and care plans to medical school curricula is one key solution. In addition, specialized cancer care centers that offer survivorship care to adult patients can broaden their scope to welcome childhood cancer survivors.

Wider policy changes could also help, including standardizing insurance reimbursement for survivorship care, integrating survivorship plans into electronic health records, and funding care navigators to help patients transition from pediatric to adult care.

Why survivors do not receive care

Survivors also miss out on care because of barriers at the personal level. Some people lack knowledge about survivorship care or hold inaccurate beliefs, including that care is not very important. Others actively avoid seeking follow-up care because of emotional trauma or distress related to getting cancer treatment at a young age.

“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.”

Helping survivors understand their risks and feel empowered can make them more likely to stay engaged in follow-up care, the review found. Solutions include giving patients a clear survivorship care plan and treatment summary before they leave pediatric care, along with shared decision-making tools that help patients, caregivers and providers collaboratively build the care plan. Peer mentorship programs can also support young adults as they navigate the transition from pediatric to adult care.

Researchers have identified many factors as barriers or facilitators to survivorship care for childhood cancer survivors, but most survivors still do not receive the recommended survivorship care. New research building on the findings from this review can help raise awareness and make survivorship care more accessible and easier to scale, Hempel said.

About this study

In addition to Hempel and Mobley, the study’s other authors are Maria Bolshakova, Naghmeh Aminzadeh, Jennifer Dinalo and Aneesa Motala from the Southern California Evidence Review Center, Keck School of Medicine of USC, University of Southern California; Joel Milam, Kimberly Miller and David R. Freyer from the Southern California Center for Young Adult Cancer Survivorship Research, Los Angeles and Irvine, California; Xu Ji from Emory University School of Medicine, Atlanta, Georgia; Carla L. Fisher and Raymond B. Mailhot Vega from the University of Florida College of Medicine, Gainesville, Florida; Julia Stal from the Dana-Farber Cancer Institute, Boston, Massachusetts; and Carol Y. Ochoa-Dominguez from the University of California San Diego School of Medicine.

This work was supported by the Agency for Healthcare Research and Quality (AHRQ), part of the U.S. Department of Health and Human Services (HHS) [Contract No. 75Q80120D00009/Task Order 75Q80120F32001]. The authors of the publication are responsible for its content, and the content does not necessarily represent the official views of or imply endorsement by AHRQ or HHS.