Many Survivors of Adolescent and Young Adult Cancers Have Chronic Health Problems, Unhealthy Behaviors

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A teenage girl looking out a window

A new analysis shows there is a need for better follow-up care for survivors of adolescent and young adult cancers.

Survivors of adolescent and young adult (AYA) cancers have worse health and unhealthier behaviors than people without a history of cancer, a 2012 analysis showed. These survivors smoke more and exercise less, and they have a higher prevalence of chronic medical conditions and obesity, poorer mental and physical health, and more financial barriers to medical care access.

Results of the study, which used data from the Centers for Disease Control and Prevention’s (CDC) 2009 Behavioral Risk Factor Surveillance System, were published June 11 in Cancer.

“There has been an increasing amount of literature showing that AYA cancer patients have experienced fewer improvements in survival compared with younger children and older adults, so we decided to take a closer look at that population,” explained lead author Dr. Eric Tai, a medical officer in the CDC Division of Cancer Prevention and Control.

To learn more about the health status of survivors of AYA cancers, Dr. Tai and his colleagues analyzed survey responses from 4,054 people who had first been diagnosed with cancer between the ages of 15­ and 29 and more than 345,000 people without a history of cancer.

Compared with people who had no history of cancer, the researchers found that those who’d had cancer as AYAs were more likely to be current smokers, be obese, have various chronic conditions, be disabled, and have poor mental and physical health. Survivors of an AYA cancer were also more likely than those with no cancer history to be unemployed or unable to work and to report not seeking medical care due to concerns about cost.

“I think these findings are a reminder of how vulnerable this population is,” commented Dr. Ashley Wilder Smith, a behavioral scientist in the Outcomes Research Branch of NCI’s Division of Cancer Control and Population Sciences. “There are a lot of psychosocial, educational, employment, and behavioral issues that we really need to be attending to for this group of cancer survivors.”

For example, the CDC researchers believe that interventions to prevent AYA cancer survivors from starting to smoke and to help them quit should be a priority. “This is especially true for adolescents,” they noted, “because their intention to smoke is closely correlated to future smoking.”

The study authors also noted the low rate of proper follow-up care for this population: “Most AYA cancer survivors are not followed in cancer survivorship programs and often are cared for by primary care physicians who may be unaware of the risks associated with AYA cancer and therapy,” they wrote.

Self-Reported Risk Behaviors, Chronic Conditions, and Health Status (Source: Behavioral Risk Factor Surveillance System, 2009)

Source: Behavioral Risk Factor Surveillance System, 2009

One way that health providers can improve the health of AYA cancer survivors is by developing individualized survivorship care plans, as recommended by the Institute of Medicine in a 2005 report, Dr. Tai said. “Health care providers really need to utilize established follow-up guidelines for pediatric and AYA patients. Those guidelines can equip providers with information on late effects, risk factors, screening and treatment, and counseling and other interventions that target unhealthy behaviors.”

The medical oncology community should do more to educate primary care providers on the follow-up care these patients need, added Dr. Smith. AYA survivors “are living a long time with a history of chronic disease,” she said. “Plus, there are so many transitions going on in their lives in terms of education, employment, frequent relocations, as well as relationship and family-related issues.” These factors “all tend to interact, making a bit of a perfect storm” that hampers AYA survivors obtaining recommended follow-up care for themselves, she explained. 

Matthew Zachary, an AYA cancer survivor and founder of the advocacy group Stupid Cancer, said he wasn’t surprised by the long-term challenges and risks faced by this survivor population. “A lot of this has long been obvious to those of us who live in the bubble. But it’s really good that more of these studies are coming out now because it gives credence to what we already knew to be true,” he said. “It helps us make the case to the public” about the importance of addressing the special needs and concerns of the AYA cancer population.

Specialized AYA programs in cancer treatment centers may be another part of the solution, Dr. Smith believes. Even if a cancer center primarily serves pediatric or adult patients, the facility should have a program “or at least a liaison staff member who is really focused on the needs and issues of the AYA population,” she suggested.

Such programs are being established at some NCI-designated comprehensive cancer centers. But most young adults are treated in community settings, which means that NCI centers and other large academic-based institutions with AYA programs and expertise need to reach out to the community and make their services available to more young adult cancer patients, she commented.

The CDC study “is a key paper because it really highlights the fact that not only do we need to focus on better follow-up care for AYA survivors, but we also need to look at this population more holistically,” said Dr. Smith.

  • Posted: June 26, 2012

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