Roxanne Nelson, BSN, RN

January 21, 2016

SAN FRANCISCO — In a survey of nearly 700 survivors of childhood cancer, 23% of respondents reported one or two instances of foregoing needed healthcare because of the costs involved, and 31% reported at least three instances.

Survivors who are uninsured, female, and living with a chronic health condition were all at greater risk of not getting needed medical care because of cost, according to data presented here at the Cancer Survivorship Symposium Advancing Care and Research.

This study "provides a sobering view of the impact of underinsurance on the use of needed health care services," said Lowell E. Schnipper, MD, the Theodore and Evelyn Berenson Professor of Medicine at Harvard Medical School in Boston.

"This is a representative depiction of the situation confronting children followed by the Childhood Cancer Survivor Study and, more than likely, most Americans, who are underinsured," he said. "The heavy burden of the financial costs of necessary medical care falls on individuals and families, and is the direct stimulus for the affected people to miss appointments or fail to take needed medications."

These findings are a call to action, and point toward a problem that "is in desperate need of attention," Dr Schnipper added.

Unique Study of Survivors of Childhood Cancer

Previous studies of adult and adolescent/young adult survivors looking at cost as being a barrier to care have shown that it does cause decreased utilization, explained lead researcher Douglas Fair, MD, a pediatric oncologist from the University of Utah in Salt Lake City.

"Our study is unique because we are looking only at survivors of childhood cancers," he told Medscape Medical News. "And we are showing that childhood survivors have the same problem as other survivors when it comes to cost-related barriers."

The financial impact of a cancer diagnosis can be significant in the United States, as previously reported by Medscape Medical New. Costs affect not only patients undergoing active treatment, but also those needing survivorship care. In one recent survey of nearly 1600 cancer survivors, 27% of respondents reported at least one money problem related to their cancer, such as debt, bankruptcy, or having to make some sort of financial sacrifice.

But children are a unique group, Dr Fair pointed out. More than 80% of children diagnosed with cancer will survive at least 5 years and become long-term survivors. Like other cancer survivors, they face an elevated lifetime risk for morbidity and premature death stemming from their disease and/or treatment.

However, children face different and increased risks for subsequent chronic conditions and socioeconomic challenges, he explained. This is because of their younger age at diagnosis, the greater intensity of their treatment, and a longer duration of survivorship.

"We can't say causation, because our study doesn't prove that," Dr Fair noted. "But we found associations, and the more prominent ones related to cost were a lack of medical insurance, being female, and having a chronic medical condition, which 85% of the people in our cohort had."

Being female is a factor that has come up before, he said. "Women have a harder time obtaining medical care, and often have more complications in survivorship. Some of that may be physiological, but other aspects are more subtle, such as cultural ones."

"The sad story of all of this is that the ones with chronic health conditions are the ones who need care the most, and they are the ones most likely to skip some of their needed healthcare," Dr Fair continued. "This may be because they also have more social morbidities. They may not have a job or not have insurance because they don't have a job, so again, they are socioeconomically vulnerable."

Study Details

In their study, Dr Fair and his colleagues assessed long-term survivors who participated in the Childhood Cancer Survivor Study, which was started in 1994 to understand late effects, increase survival, and minimize harmful health effects.

In a survey of insured and uninsured survivors conducted in 2011 and 2012, participants were asked the following question: "In the past year, was there a time when you did any of the following because you were worried about the cost?" Among the 10 response options were skipping a test/treatment, postponing medical care, and taking a smaller cost of a prescription.

The 698 survey respondents (response rate, 64%) had been diagnosed with cancer from 1970 to 1986 and were younger than 21 years of age at the time of their cancer diagnoses. The mean age at the time of survey was 39.6 (range, 24 - 60 years), and average time since diagnosis was 31.3 years.

Of the respondents, 79 were uninsured. Of those with insurance, 577 had private coverage (employer, military, individual) and 115 had public insurance (Medicaid or Medicare).

The majority of respondents were white (n = 646), and 352 had at least a college education.

Only 15% reported an absence of any chronic health condition.

The odds of forgoing needed healthcare because of cost was highest for those without health insurance (odds ratio [OR], 5.13; P < .001), for those with a chronic condition (OR, 1.79; P = .01), for those diagnosed with cancer at the age of 11 to 15 (OR, 1.76, P = .04), for those who were female (OR, 1.66; P = .002), and for those with private insurance (OR, 1.23; P = .42).

Even those who had some degree of health insurance still missed needed healthcare. For example, 78 respondents who reported having at least some coverage did not appropriately fill their prescriptions, and 185 with dental insurance missed needed dental care.

At this time, it is unclear if the Affordable Care Act (ACA) will have any impact — positive or negative. "The cutoff was in 2012 when the ACA was rolled out, so we are planning on updating it to see if it made a difference," he said. "But even so, some states have not expanded Medicaid and some people have lost insurance, so we will have to see how it affected this population."

Dr Fair has disclosed no relevant financial relationships. Coauthor Anne C. Kirchhoff, PhD, from the University of Utah in Salt Lake City, reports stock and/or other ownership interests in Medtronic. Coauthor Wendy M. Leisenring, ScD, from the Fred Hutchinson Cancer Research Center in Seattle, reports receiving research funding from Merck.

Cancer Survivorship Symposium (CSS) Advancing Care and Research: Abstract 20. Presented January 15, 2016.

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