Young Patients With Cancer Don't Always Get the Info They Need

ALEXANDRA DVORAK WAS 19 when she was diagnosed with Hodgkin lymphoma. Because of her age, her doctors decided that following a protocol designed for children would be most effective, and the best place to go for care was Children’s National Medical Center, in Washington, D.C.

That turned out to be a good decision. Dvorak, now 27, got better, and has been cancer-free for eight years. But during her treatment, she felt sidelined by her doctors, largely because she was kept in the dark about potential side effects of chemotherapy. Her doctors felt much more comfortable talking to her parents.

“I was on the cusp of adulthood and, suddenly, I was being treated like a child again,” Dvorak recalls. “I wasn’t told that chemo causes mouth sores, and when I complained about neuropathy, I was told it was anxiety. Their approach added to the loneliness I already felt.”

While poor communication with physicians is not unique to adolescents and young adult (AYA) survivors, research has shown that practitioners do have difficulty relaying bad news directly to this group. They also sometimes neglect to discuss fertility issues, an oversight that Dvorak experienced, as well. “When I was told much later that fertility could be an issue, I was shocked,” says Dvorak. “I wish I had known earlier.”

Another issue AYAs face involves financial burdens related to insurance. A study published in Cancer Causes & Control in June 2017 found more pronounced disparities in survival by race/ethnicity and neighborhood socioeconomic status among AYAs based on whether they had private or military insurance versus public insurance. Overall, for AYAs with public health insurance, the findings were troubling: This group had a greater risk of death, which is often attributed to factors such as undertreatment, poor follow-up care and reduced access to health-promoting resources.

The study did not determine why those with public insurance had worse outcomes, but noted that it may be related to the same reasons that vulnerable groups find it difficult to meet the financial responsibilities that accompany private plans, such as high deductibles, co-pays and co-insurance.

“These findings predate the ACA (Affordable Care Act),” which allows children to be covered under their parents’ health insurance plans until age 26, and prevents insurers from withholding coverage due to pre-existing conditions, says Mindy C. DeRouen, Ph.D., M.P.H., the study’s first author and an investigator with the Cancer Prevention Institute in California.

“When new data become available, we can assess whether the law made a difference. For now, we need more information about how socioeconomic status affects overall outcomes and quality of life for AYAs.”