Long-Term Follow-Up

Financial stress could hamper recovery

In the last decade, researchers have made major strides against cancer. Transplant survivorship rates have increased dramatically, and the risks of complications from these procedures continue to drop significantly.

Researchers at Fred Hutchinson Cancer Research Center and other cancer institutions around the country continue to perfect transplantation, but awareness is growing that a focus on physical cure is simply not enough.

Today, many researchers are studying a major problem that is relevant not only to former patients who have undergone the procedure but also to future patients: the economic burden of transplantation.

"We are aware of the high costs of transplants, and are just starting to understand the patient burden," said Dr. Stephanie Lee, a Fred Hutch investigator who focuses on transplant survivorship and quality-of-life issues.

"We think that financial stress could possibly lead to a lower success of transplants," she said. "It certainly makes the patient and the family miserable when they should be focusing on health problems."

Most recently, Lee collaborated with Dr. Nandita Khera in a study that reviewed the economics of hematopoietic cell transplantation (HCT) over a 25-year period.

Cancer treatment, they said, has a huge economic impact on individuals, the health care system and governments. HCT is particularly expensive because it is such a specialized, resource-intensive technology. And thanks to major medical advancements, HCT is being offered to more patients than ever before, including patients with higher-risk cancers and those with chronic non-cancerous diseases such as Crohn's disease.

The economics of cancer care have come to the forefront in recent years, as the cost of health care continues to rise. At Fred Hutch, the subject is so important that Center leaders launched the Institute for Cancer Outcomes Research and Evaluation earlier this year.

"With the tremendous strains on patients and the health care system due to the rising costs of medical care, there is a growing awareness of the importance of health economics and outcome evaluation in our society," said Dr. Larry Corey, president and director of the Hutchinson Center.

"While our primary mission is to prevent and cure cancers, it is also necessary to ensure that the therapies we offer patients are well selected both clinically and economically. The Hutchinson Center, as one of the nation's leading cancer research centers, should be at the forefront of this important work," Corey said.

Dr. Scott Ramsey, a national leader in health care economics, has been appointed first director of ICORE, which is scheduled to begin operations early next year.

"We no longer live in a world where we can ignore the costs of treatments we are recommending," Khera said.

And because health care costs continue to rise, Khera and Lee said it's imperative to understand the economics and cost-effectiveness of therapies such as HCT. They said the objective of these studies is not to limit treatments available to patients but to provide the most effective therapies.

"We are working to understand the cost drivers of transplant so that we can lower costs," Lee said. "This will benefit our patients now—and also future patients who might not be able to have a transplant if the costs are too high."

According to their study, one of the greatest challenges to understanding the financial consequences of HCT therapies are the economic burdens felt by patients and their families.

Direct costs, including medical treatments, hospitalizations and medications are generally well recorded and available to researchers, Khera said.

But it's more difficult to ascertain the indirect expenses such as transportation and other out-of-pocket costs that patients incur during treatment.

"How do you measure intangible costs, such as lost productivity and time away from work?" Khera said.

Their report suggests that studies to understand cost-effectiveness should include analysis of long-term costs, and all indirect and intangible financial burdens that patients and their families experience.

A better understanding of the real direct, indirect and intangible costs associated with HCT can better inform clinicians, patients and policymakers about the best way to share resources.

Understanding the cost-effectiveness of cancer treatments yields the promise that patients will receive treatments that are not only effective, but are also less financially burdensome to society and minimally disruptive to patients and to family and friends who assist in their care.

What about patients who have already received a transplant?

Khera and Lee emphasize that patients should talk to their providers about any financial burdens or hardships that may stand in the way of follow-up care.

"It may be tempting to cut back on medicine or doctor visits if money is tight, but that's not a good solution," Khera said.

"You have gone through transplant, and you can improve your odds of doing well in the future by continuing with your doctor visits and your preventive care."

Fred Hutchinson Cancer Research Center is a world leader in research to prevent, detect and treat cancer and other life-threatening diseases.