"It still affects our economic situation": long-term economic burden of breast cancer and lymphedema

Abstract

Purpose: Financial toxicity after breast cancer may be exacerbated by adverse treatment effects, like breast cancer-related lymphedema. As the first study of long-term out-of-pocket costs for breast cancer survivors in the USA with lymphedema, this mixed methods study compares out-of-pocket costs for breast cancer survivors with and without lymphedema.

Methods: In 2015, 129 breast cancer survivors from Pennsylvania and New Jersey completed surveys on demographics, economically burdensome events since cancer diagnosis, cancer treatment factors, insurance, and comorbidities; and prospective monthly out-of-pocket cost diaries over 12 months. Forty participants completed in-person semi-structured interviews. GLM regression predicted annual dollar amount estimates.

Results: 46.5% of participants had lymphedema. Mean age was 63 years (SD = 8). Average time since cancer diagnosis was 12 years (SD = 5). Over 98% had insurance. Annual adjusted health-related out-of-pocket costs excluding productivity losses totaled $2306 compared to $1090 (p = 0.006) for those without lymphedema, or including productivity losses, $3325 compared to $2792 (p = 0.55). Interviews suggested that the cascading nature of economic burden on long-term savings and work opportunities, and insufficiency of insurance to cover lymphedema-related needs drove cost differences. Higher costs delayed retirement, reduced employment, and increased inability to access lymphedema care.

Conclusions: Long-term cancer survivors with lymphedema may face up to 112% higher out-of-pocket costs than those without lymphedema, which influences lymphedema management, and has lasting impact on savings and productivity. Findings reinforce the need for actions at policy, provider, and individual patient levels, to reduce lymphedema costs. Future work should explore patient-driven recommendations to reduce economic burden after cancer.

Keywords: Breast cancer; Economic burden; Financial toxicity; Lymphedema.

Fig. 1

Conceptual overview of mixed methods approach. This figure shows the flow of the explanatory sequential design of the mixed methods study, which begins with quantitative out-of-pocket costs data collection for all 129 participants, followed by qualitative interviews of 40 randomly selected participants, which were integrated to interpret the cost differences identified between those who had lymphedema and those who did not have lymphedema

Fig. 2

Adjusted annual out-of-pocket costs (marginal effects) for breast cancer survivors without or with lymphedema. a Mean annual out-of-pocket costs, excluding productivity losses, and 95% confidence intervals. The bar graphs in this figure compare mean annual out-of-pocket costs excluding productivity losses of $2306 for long-term breast cancer survivors with lymphedema and $1090 without lymphedema, adjusted for age, race, education, income, cash assets, consumer credit quality, interlimb difference, number of cancer adjuvant treatment modalities, years since diagnosis, number of comorbid conditions, and public or private insurance. b Mean annual out-of-pocket costs, including productivity losses, and 95% confidence intervals. The bar graphs in this figure compare mean annual out-of-pocket costs including productivity losses of $3325 for long-term breast cancer survivors with lymphedema and $2792 without lymphedema, adjusted for age, race, education, income, cash assets, consumer credit quality, interlimb difference, number of cancer adjuvant treatment modalities, years since diagnosis, number of comorbid conditions, and public or private insurance

Fig. 3

Proportion of total costs attributed to lymphedema-related needs, among those with lymphedema. The bar graphs show that 47% and 50% of cost, excluding and including productivity losses, respectively, for patients with lymphedema were costs directly relating to lymphedema needs