Patient recommendations for reducing long-lasting economic burden after breast cancer.

BACKGROUND: In the United States, patients who have breast cancer experience significant economic burden compared with those who have other types of cancers. Cancer-related economic burden is exacerbated by adverse treatment effects. Strategies to resolve the economic burden caused by breast cancer and its adverse treatment effects have stemmed from the perspectives of health care providers, oncology navigators, and other subject-matter experts. For the current study, patient-driven recommendations were elicited to reduce economic burden after 1) breast cancer and 2) breast cancer-related lymphedema, which is a common, persistent adverse effect of breast cancer. METHODS: Qualitative interviews were conducted with 40 long-term breast cancer survivors who were residents of Pennsylvania or New Jersey in 2015 and were enrolled in a 6-month observational study. Purposive sampling ensured equal representation by age, socioeconomic position, and lymphedema diagnosis. Semistructured interviews addressed economic challenges, supports used, and patient recommendations for reducing financial challenges. Interviews were coded, and representative quotes from the patient recommendations were analyzed and reported to illustrate key findings. RESULTS: Of 40 interviewees (mean age, 64 years; mean time since diagnosis, 12 years), 27 offered recommendations to reduce the economic burden caused by cancer and its adverse treatment effects. Nine recommendations emerged across 4 major themes: expanding affordable insurance and insurance-covered items, especially for lymphedema treatment (among the 60% who reported lymphedema); supportive domestic help; financial assistance from diagnosis through treatment; and employment-preserving policies. CONCLUSIONS: The current study yielded 9 actionable, patient-driven recommendations-changes to insurance, supportive services, financial assistance, and protective policies-to reduce breast cancer-related economic burden. These recommendations should be tested through policy and programmatic interventions.

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

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.

Drivers of cost differences between US breast cancer survivors with or without lymphedema.

PURPOSE: Breast cancer-related lymphedema is an adverse effect of breast cancer surgery affecting nearly 30% of US breast cancer survivors (BCS). Our previous analysis showed that, even 12 years after cancer treatment, out-of-pocket healthcare costs for BCS with lymphedema remained higher than for BCS without lymphedema; however, only half of the cost difference was lymphedema-related. This follow-up analysis examines what, above and beyond lymphedema, contributes to cost differences. METHODS: This mixed methods study included 129 BCS who completed 12 monthly cost diaries in 2015. Using Cohen's d and multivariable analysis, we compared self-reported costs across 13 cost categories by lymphedema status. We elicited quotes about specific cost categories from in-person interviews with 40 survey participants. RESULTS: Compared with BCS without lymphedema, BCS with lymphedema faced 122% higher mean overall monthly direct costs ($355 vs $160); had significantly higher co-pay, medication, and other out-of-pocket costs, lower lotion costs; and reported inadequate insurance coverage and higher costs that persisted over time. Lotion and medication expenditure differences were driven by BCS' socioeconomic differences in ability to pay. CONCLUSIONS: Elevated patient costs for BCS with lymphedema are for more than lymphedema itself, suggesting that financial coverage for lymphedema treatment alone may not eliminate cost disparities. IMPLICATIONS FOR CANCER SURVIVORS: The economic challenges examined in this paper have long been a concern of BCS and advocates, with only recent attention by policy makers, researchers, and providers. BCS identified potential policy and programmatic solutions, including expanding insurance coverage and financial assistance for BCS across socioeconomic levels.