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.