Costs Force Young Cancer Survivors to Miss Follow-up Care

Kate Johnson

September 26, 2012

September 26, 2012 — The high cost of cancer care forces many adolescent and young adult (AYA) survivors to forgo essential doctor's visits, according to a study published online September 24 in Cancer.

Even the Patient Protection and Affordable Care Act "may prove insufficient for at-risk populations such as AYA survivors who require a high level of care," write lead author Anne Kirchhoff, PhD, MPH, from the Huntsman Cancer Institute at the University of Utah in Salt Lake City, and her colleagues.

Insurance rarely covers such big costs, she explained.

Dr. Kirchhoff's team compared healthcare access and use in 979 AYA cancer survivors and 67,216 healthy control subjects in the 2009 Behavioral Risk Factor Surveillance System survey. They found that survivors went without routine medical care in the previous year because of costs more often than control subjects (risk ratio, 1.67). This was true for both insured and uninsured patients.

These young people are up against a lot in life, said Peter F. Coccia, MD, chair of the National Comprehensive Cancer Network (NCCN) AYA oncology panel, and professor of pediatrics at the University of Nebraska Medical Center in Omaha.

"They don't tend to have a family doctor, they don't have the money, they don't have the transportation, they've got a lot of competing priorities," Dr. Coccia, who was not involved in the study, told Medscape Medical News.

The study findings support these assertions, especially about money.

The proportion of study subjects reporting a lack of insurance was similar in the survivor and control groups (21% vs 23%). However, among the uninsured, more patients in the survivor group than in the control group reported avoiding medical care in the previous year because of cost (76% vs 48%; P < .001). Among the insured, the same disparity existed but at much lower levels (21% vs 11%; P < .001).

In other words, lack of insurance was equally prevalent in the survivor and control groups, but cost barriers to care were more prevalent in the survivor group.

"Survivors delay getting back to the doctor because they know that when they go for follow-up, it's not just a simple visit — it involves getting expensive tests, Dr. Coccia noted. "Even if they have insurance, there's going to be a big portion of it that they have to come up with themselves," he explained.

Many patients in the survivor and control groups had no access to a personal medical provider (63% vs 56%), but this is a more serious matter for survivors, note the study authors. "These findings are cause for concern in light of the health problems faced by many AYA cancer survivors that necessitate ongoing surveillance and/or care."

Unique Issues

At the time of the survey, all study subjects were 20 to 39 years of age; all survivors had been diagnosed at 15 to 34 years of age, and it had been a minimum of 5 years since their diagnosis.

Cost barriers were particularly high for certain subgroups of AYA cancer survivors. For patients 20 to 29 years of age, more survivors than control subjects reported avoiding medical care because of cost (44% vs 16%; P < .001); the same was true for females in this age group (35% vs 18%; P < .001).

"Survivors of AYA cancer are a growing population in the United States with unique, long-term healthcare needs," note the authors. "Although 80% of AYA patients with cancer survive at least 5 years after diagnosis, many are at risk for developing chronic health conditions from the chemotherapy, radiation, and surgery received during treatment. Medical care in the years following cancer therapy is particularly important to screen survivors for late effects such as secondary cancers, infertility, and cardiac conditions," the authors write.

They note that the economic costs of receiving healthcare go beyond out-of-pocket medical costs for this population, and include transportation and childcare costs and lost wages. "Research to improve outcomes for this population is a national priority," say the authors.

This study highlights "the unique social, psychosocial, and economic issues" of the 20- to 39-year-old cancer survivor, said Dr. Coccia. "There's poor compliance with physician visits and poor adherence to therapy for all sorts of reasons," he added.

Dr. Coccia was instrumental in developing the NCCN guidelines for AYA oncology aimed at increasing awareness about these unique issues and their link to the minimally improved survival rates in this age group in the past 35 years.

He said this study is important "because it points out that patients with cancer are not taking advantage of important follow-up.... We need to find a way to address getting these patients cared for so they can have an improved quality of life."

One of the main solutions to the problem is making sure survivors are followed by specialists, he said.

"Patients diagnosed as children tend to be followed by pediatric oncologists...[who] understand the complexity of their therapy, the side effects, the comorbidities that may develop, and the problems due to radiation and chemotherapy. But in the AYA group, patients tend to get their therapy from an oncologist and then go see a primary care physician. Maybe it would be better if their medical home is with the oncologist, not with a family physician, because [oncologists] will be much more used to dealing with the kinds of issues that cancer survivors have and are not going to be ordering a lot of unnecessary things out of ignorance of the late effects," he explained.

Dr. Kirchhoff is supported by the Huntsman Cancer Institute/ Huntsman Cancer Foundation. The study authors and Dr. Coccia have disclosed no relevant financial relationships.

Cancer. Published online September 24, 2012. Abstract