A new study from the O’Neal Comprehensive Cancer Center at University of Alabama at Birmingham (UAB), published in the October 2019 issue of JNCCN—Journal of the National Comprehensive Cancer Network, finds that direct costs for metastatic breast cancer (MBC) patients increase dramatically when their treatment differs from recommendations in the NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines). Previous studies have found that guideline discordant care results in higher health care costs overall, but this is the first study to look specifically at the cost burden for patients.    

“We thought that it was important to explore potential differences in out-of-pocket costs, since financial toxicity is a growing issue among patients with metastatic breast cancer,” explained Courtney P. Williams, MPH, Division of Hematology and Oncology, O’Neal Comprehensive Cancer Center at UAB. “We found about one in five women received an anticancer treatment that wasn’t listed within the NCCN Guidelines. Those women were responsible for higher out-of-pocket costs—including deductibles, coinsurance, and copayments—in the year following their metastatic breast cancer diagnosis than those receiving an anticancer treatment listed within the guidelines. This finding is especially important for older patients, which made up about 75 percent of our sample, since financial and psychological distress could be worse for patients living on a fixed income.”

The retrospective study used the SEER-Medicare database to look at patient costs for 3,709 women diagnosed with MBC between 2007 and 2013 who survived at least a year after diagnosis. Treatment regimens were matched to the version of the NCCN Guidelines® for Breast Cancer that were available at the exact treatment date. The definition of guideline-concordant care varied depending on date due to NCCN’s frequent guideline updates.

The median patient cost for the year post-diagnosis was $5,171 for care that fit within contemporary NCCN Guidelines, versus $7,421 for care that deviated from them. Both overtreatment and undertreatment—as defined by the guidelines—ultimately resulted in higher patient costs.

“The observation that out-of-pocket costs may be greater for guideline discordant care is important for both patients and physicians to understand, especially when many guideline discordant treatments may not improve clinical outcomes,” commented Matthew P. Goetz, MD, Mayo Clinic Cancer Center, Member of the NCCN Guidelines Panel for Breast Cancer, who was not involved in this study. “Clinical trials should be prioritized as a way to offer patients access to new drugs/treatments that might not otherwise be available to them, while limiting out-of-pocket expenses.”

Non-approved use of bevacizumab accounted for the highest increase in patient expenses, and was also associated with worse outcomes. The article cited this fact as a “cautionary tale for physicians who add novel agents without proven benefit to treatment regimens,” and argued that it might be better to provide no treatment, than to provide a “guideline-discordant treatment associated with mild but persistent and bothersome adverse events.”

“NCCN Guidelines exist to provide recommendations based on scientific evidence and expert opinion,” said Williams. “Although there will always be circumstances where off-guideline treatment is warranted, physicians should aim to comply with current guidelines for the safety of the patient, both physically and psychologically, as well as to decrease adverse outcomes such as financial toxicity.”

To read the entire study, visit JNCCN.org. Complimentary access to “Guideline Discordance and Patient Cost Responsibility in Medicare Beneficiaries with Metastatic Breast Cancer” is available until January 10, 2020.

This announcement was originally published on October 10, 2019, on the National Comprehensive Cancer Network website.