Young adult cancer survivors often forgo follow-up medical care

To increase the chances that young adult cancer survivors will return for recommended follow-up services, family physician Kevin Oeffinger, MD, makes sure to discuss cost and less-expensive alternatives.

“We really need to build that into the decision-making. & It’s really helpful to give them options,” said Dr. Oeffinger, director of the Adult Long-Term Follow-up Program at Memorial Sloan-Kettering Cancer Center in New York.

More than a half- million cancer survivors 20 to 39 years old live in the U.S., but a study published online Sept. 24 by the journal Cancer found that they are more likely to go without care because of cost than peers who have not had cancer.

“People who are long-term survivors really have a hard time accessing care, but they need to be seen,” said Anne C. Kirchhoff, PhD, MPH, lead study author and an investigator at the Huntsman Cancer Institute in Salt Lake City.

Researchers analyzed data from the Centers for Disease Control and Prevention’s 2009 Behavioral Risk Factor Surveillance System on adults 20 to 39. A total of 979 had been diagnosed with cancer between ages 15 and 34 and were at least five years past the date of their diagnosis. They were compared with 67,216 adults with no cancer.

Both groups had similar rates of having health insurance. But those with a history of cancer were 67% more likely to go without care because of cost. Most guidelines say cancer survivors should receive regular monitoring for recurrence, cancers elsewhere in the body and potential ill-effects of treatment.

The study did not explore the reasons why these patients may have cost-related problems accessing care. But physicians who treat cancer survivors have several theories.

Why patients don’t seek care

Some of the reasons are connected to the nature of the age group, they said. Most young adults experience some economic instability. They may be burdened with significant school loans, and the economic climate has been particularly tough on younger people. The unemployment rate for the general population was 8.1% in August and 13.9% for Americans 20 to 24, according to the U.S. Bureau of Labor Statistics.

“This age group just doesn’t have the resources that those who are older have,” Dr. Oeffinger said.

Young adults with cancer have additional economic challenges. Other studies by Kirchhoff have found they have higher rates of unemployment, and they tend to be lower-paid if they have jobs.

At the same time, cancer treatment is expensive. For example, research has shown that treatment and the six-month follow-up for cervical cancer can cost $3,000 to $45,000.

The burden of the costs can fall even on insured patients, with multiple visits and treatments adding up to a lot of money spent out-of-pocket. Kaiser Family Foundation data indicate that all insured patients with HMO coverage have an average annual deductible of $691. Patients in PPOs have an average deductible of $733. The average deductible was $2,086 for those with consumer-directed health plans. The average co-payment for a single in-network physician office visit is $23 for primary care doctors and $33 for specialty physicians.

In addition, patients may not see follow-up care as an economic priority.

“It can take years to recover financially,” said Jennifer Wright, MD, a co-author of the Cancer study and assistant professor of pediatrics at the University of Utah. “A lot of them are still working on paying for the original care, much less worrying about follow-up. And they are usually so happy to be done with treatment that they are not focused on follow-up appointments.”

Health policy analysts expect the Affordable Care Act to benefit young adult cancer survivors. The law allows adult children to stay on their parents’ health insurance until age 26, eliminates coverage limits, prevents recisions and provides plans for those with preexisting conditions.

Doctors say the study’s findings show that younger cancer survivors need special attention to get them to seek care.

“This population is only going to get bigger as our technology and treatment improves,” Dr. Wright said. “And they’ve already been through so much already. You can be creative and be really very thoughtful about how you’re caring for these patients.”