High costs of breast cancer-associated lymphedema can ‘cripple’ patients financially

In In The News by Barbara Jacoby

From: healio.com

Individuals with breast cancer continue to face high health care costs years after a diagnosis, according to study findings published in Journal of Supportive Care and Cancer.

The problem is particularly apparent among those with breast cancer-associated lymphedema.

Results showed annual out-of-pocket costs of $2,306 for those with lymphedema vs. $1,090 for those without lymphedema — a 112% difference — when excluding productivity costs, and $3,325 vs. $2,792 when including productivity costs.

“That extra $1,000 or so may not break the bank in 1 year,” Lorraine T. Dean, ScD, assistant professor of epidemiology and oncology at Johns Hopkins Bloomberg School of Public Health and Kimmel Cancer Center, said in a press release. “But it can take away discretionary spending, or whittle away retirement savings. If it is a recurring burden each year, how can one ever rebuild? That extra $1,000 in spending can cripple people long term.”

HemOnc Today spoke with Dean and Kala Visvanathan, MD, MHS, professor of epidemiology and oncology at Johns Hopkins Bloomberg School of Public Health and Kimmel Cancer Center, about the potential explanations for why breast cancer is associated with such high costs, and what should be done to address the problem.

Question: What prompted this research?

Dean: We already knew that just having a breast cancer diagnosis could increase health care costs, and that it could lead to increased financial burden or even bankruptcy. Greater financial burden also is associated with greater mortality after cancer. There is limited information on the costs for those living with lymphedema. On top of this, most studies on lymphedema costs had only been calculated within the first 2 years of lymphedema diagnosis. Lymphedema is a chronic condition, and people live with it long term, yet we did not know the long-term costs associated with this condition.

Q: How did you conduct the research?

Dean: This study had two components: a survey and an interview. We had patients — half of whom had lymphedema and half of whom did not — track their out-of-pocket costs for an entire year. We measured arm circumference to determine the severity of lymphedema. We then asked them to fill out a log about their health care costs in different categories, and to bring in receipts and documents. Through an online survey, they were able to document how much they spent for each visit and whether those visits were related to lymphedema. In addition, we asked them about their time away from work and any out-of-pocket health care costs they may have faced, including those specifically related to lymphedema. We also did one-on-one, 30-minute interviews with 40 randomly selected patients. We asked them questions about their history, how their financial burden had changed over time and what they thought should happen as a result. This is the topic of a pending paper that we hope to publish.