WASHINGTON — Survivors of childhood cancer have an increased risk of experiencing disabling conditions, both from the cancer itself and from the effects of treatment, says a new report from the National Academies of Sciences, Engineering, and Medicine. The report, Childhood Cancer and Functional Impacts Across the Care Continuum, examines clinical trial participation and advances in treatment, which have implications for improving patient outcomes and quality of life.

There are an estimated 500,000 survivors of childhood cancer in the United States. Despite improved survival in recent decades for many childhood cancers, chronic health problems related to treatment are common among survivors. These encompass a range of physical, cognitive, and psychosocial disorders and associated functional limitations.

In some cases, impairments resulting from cancer and its treatment are severe enough to qualify a child for monetary benefits through the U.S. Social Security Administration (SSA) Social Security Disability Insurance or Supplemental Security Income programs. During fiscal year 2019, SSA granted disability benefits to 2,725 children for cancer claims.

The report identifies three time frames of interest with respect to childhood cancers and SSA’s disability determination processes. The first is the time from a child’s cancer diagnosis through active treatment and an anticipated period of recovery from the acute effects of treatment. During this recovery period, the child is unlikely to be able to participate in school or other activities. The second is the time following treatment and recovery from any acute effects of treatment, during which the child may continue to experience chronic effects of treatment and/or develop secondary late effects. The third is the period of adulthood (age 18 and older), during which individuals may continue to experience chronic effects or develop late effects of the treatment for their childhood cancer.

“Cancer and its associated treatment can leave an indelible mark on children, so it’s critical to monitor for ongoing health problems and side effects well into adulthood,” said Paul A. Volberding, professor emeritus at the University of California, San Francisco School of Medicine and chair of the committee that wrote the report. “For many survivors of childhood cancer, their last treatment is just the beginning of their journey. During care transitions, in clinical trials for new treatment regimens, and in disability determinations, we need to consider long-term effects and how we can help survivors thrive as adults.” 

Advances in immunotherapy have shown promise for improving childhood cancer survival rates, the report says. However, like traditional treatment approaches (surgical interventions, chemotherapy, and radiation therapy), immunotherapy has side effects, and it is important for survivors to receive lifelong surveillance for treatment-related toxicities. Further studies are needed to understand how these novel therapies can be incorporated into the treatment of both newly diagnosed patients and those who have experienced a relapse.

There is also an urgent need for clinical trials that aim to improve survival and mitigate the toxicity of cancer treatment. For some types of pediatric cancers, clinical trial participation is considered the standard of care. However, adolescents over age 12 and racial and ethnic minority groups continue to be underrepresented, the report says. Without a high rate of trial participation, it is difficult to generate meaningful research findings that are applicable to diverse populations.

The study — undertaken by the Committee on Childhood Cancers and Disability — was sponsored by the U.S. Social Security Administration. The National Academies are private, nonprofit institutions that provide independent, objective analysis and advice to the nation to solve complex problems and inform public policy decisions related to science, technology, and medicine. They operate under an 1863 congressional charter to the National Academy of Sciences, signed by President Lincoln.