Lymphedema Adds to Financial Hardship After Breast Cancer

Kristin Jenkins

August 30, 2018

The first study to look at out-of-pocket expenses faced by breast cancer survivors in the United States shows that women with adverse treatment effects, such as chronic lymphedema, carry a particularly large economic burden that has a profound and lasting impact on their financial future, say researchers.

The study, led by Lorraine T. Dean, ScD, assistant professor, Department of Epidemiology, Johns Hopkins Bloomberg School of Public Health, Johns Hopkins University, Baltimore, Maryland, was published online August 22 in Supportive Care in Cancer.

The mixed-methods study of 129 long-term breast cancer survivors, most of whom had health insurance, showed that women with chronic lymphedema had directly related additional costs that were up to 112% higher than those of women who didn't develop lymphedema.

At an average of 12 years after diagnosis, lymphedema had also exacerbated losses in work productivity and long-term earning potential, leaving patients unable to help with their children's education, to retire, or to continue treatment for lymphedema.

Managing breast cancer-related lymphedema presents ongoing challenges, and may require leverage of additional resources through family, credit, or savings, patients with ongoing lymphedema care needs may never recover financially, the authors write.

"Use of savings and retirement [savings] to cover lymphedema and healthcare costs can affect women long term and have intergenerational effects," they add.

The cascading nature of this additional economic burden for breast cancer survivors with lymphedema "framed their subsequent health and lifestyles and still affect them currently," the researchers said.

Study Details

For the study, 129 breast cancer survivors from Pennsylvania and New Jersey completed a questionnaire about the economic burden of long-term survival between May and September 2015. The survey used 12 items adapted from the Breast Cancer Finances Survey. 

The mean patient age was 63 years, and almost half of the women (46.5%) had been diagnosed with lymphedema.

Participants also kept diaries on monthly out-of-pocket expenses during a 12-month period, and 40 participants, both with and without lymphedema, completed in-person qualitative interviews.

Although all patients with breast cancer reported out-of-pocket expenses associated with treatment, those with lymphedema had additional uninsured costs, such as physical therapy, lymphedema specialists, sleeves, and garments.

There were no statistically significant differences by lymphedema status in terms of mean age, race, education, social status, type of insurance, or number of economically burdensome events, the study showed. However, more breast cancer survivors with lymphedema were in a lower income category (P = .02), the researchers said.

Similarly, there were no significant differences between breast cancer survivors with and without lymphedema across cancer stage at diagnosis, type of adjuvant treatment, and number of comorbidities. Despite this, women with lymphedema had been diagnosed an average of 3 years earlier than their peers without lymphedema (P = .002). They also had greater interlimb difference (P < .001).

Change in Insurance Coverage Needed?  

The study showed that the annual adjusted out-of-pocket health costs (excluding costs related to loss of productivity) were $2306 for breast cancer survivors with lymphedema compared with $1090 for women without lymphedema (P = .006).

When productivity losses were taken into account, the economic burden was 19% higher than that among women without lymphedema ($3325 vs $2792; P = .55). Nearly 50% of the total costs were related to lymphedema.

In a statement issued by the Bloomberg School, Dean emphasized that changes to insurance coverage are needed, pointing to legislation currently before Congress proposing insurance coverage for items such as compression garments.

"The U.S. is too resource-rich for people to have to make decisions between their health and their wealth," said Dean. "By making some important changes in coverage, we can help breast cancer survivors who continue to struggle with economic burdens long after their cancers are considered cured."

Initially, an extra $2000 in annual costs may not seem like such a big deal, but over the long term, "that extra $2000 in spending can cripple people," she said.

In the statement, coauthor Kala Visvanathan, MD, also from the Department of Epidemiology at the Bloomberg School, said that growing evidence shows the economic burden of cancer treatment can affect survivors' mental health and many other health outcomes, including mortality rates.

Long-term Sequelae

When approached for comment, Patricia A. Ganz, MD, distinguished professor of health policy and management, University of California Los Angeles (UCLA) Fielding School of Public Health, and professor of medicine at David Geffen School of Medicine at UCLA, said, "It's a matter of early detection and treatment. We need to be aware of these costs, but the best thing we can do is prevent lymphedema by minimizing treatment to the axillae and make sure patients get helpful physical interventions early on."

Ganz, who is also director of Cancer Prevention and Control Research at Jonsson Comprehensive Cancer Center, noted that lymphedema is associated with being overweight, but the study did not account for other comorbidities, such as diabetes.

"We know that cancer is not over when treatment is over," Ganz told Medscape Medical News. "I think this study also speaks to cancer survivors experiencing the sequelae of treatment and living with persistent pain and physical limitation. I would suspect that the breast cancer survivors in this study without lymphedema may have had their own pain and limitation too."

American Society of Clinical Oncology expert Harold J. Burstein, MD, PhD, associate professor of medicine at Harvard Medical School, Boston, Massachusetts, agreed. Like Ganz, he emphasized that "the best way to treat lymphedema is to prevent it from happening."

Burstein is a medical oncologist and clinical investigator in the Breast Oncology Center at the Dana-Farber Cancer Institute and Brigham and Women's Hospital.

"This study brings light to an unseen consequence of breast cancer therapy — lymphedema and economic hardship," said Burstein. "Too many women pay a high price, literally and figuratively, for breast cancer care."

Thanks to advances in breast cancer management, most women are now at a significantly reduced risk for lymphedema, he noted. "The good news is that in contemporary practice, the vast majority of patients are candidates for sentinel lymph node surgery. This causes far less in the way of lymphedema than the historical approach of complete axillary dissection surgery."

However, while guidelines now recommend that complete axillary lymph node dissection (ALND) can now be omitted in many patients with breast cancer, and that removal of only the sentinel lymph node is sufficient, a recent survey found a wide variation in surgeons' practices, as reported by Medscape Medical News. The results suggest that  in many situations, patients are undergoing ALND unnecessarily and thus, in essence, are being overtreated, the authors commented.

This work was funded by the National Center for Research Resources and the National Center for Advancing Translational Sciences of the National Institutes of Health; the National Cancer Institute; the National Institute of Mental Health; the Sidney Kimmel Cancer Center; Johns Hopkins University Center for AIDS Research; the National Institute on Drug Abuse; and the National Institute on Aging. Dean and study coauthors, Burstein, and Ganz have disclosed no relevant financial relationships.

Support Care Cancer. Published online August 18, 2018. Abstract

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