Patients Recommend Ways to Reduce Breast Cancer-Related Long-Term Cost Burden

Patient-driven recommendations to reduce breast cancer-related economic burden could be key to shaping policies and interventions.

Breast cancer survivorship is often associated with a significant long-term economic burden, especially for those managing adverse effects, such as breast cancer-related lymphedema. Health care providers can play an important role in helping patients navigate the financial complexities of their care. Still, the cost burden often persists beyond initial diagnosis and can have devastating long-term effects.

A new study published in Cancer provides a patient perspective on potential approaches to addressing the cost-related toxicities of breast cancer treatment. Patient-driven recommendations included solutions that go beyond direct medical costs, including psychosocial costs, indirect costs, time costs, and nonmedical direct costs.

“Patients have first-hand experience in navigating insurance and seeking eligibility for programs to help mitigate economic burden,” the researchers wrote in the study. “Documenting patients’ experiences through qualitative analysis can provide key insights into how to reduce economic burden.”

For the study, 40 long-term breast cancer survivors were selected for a qualitative interview from May to September 2015. Most of the patients received chemotherapy (77%) and radiation (83%), while 25% received hormonal therapy. Of the patients who participated, 60% experienced breast cancer-related lymphedema.

Of the patients interviewed, 27 offered recommendations aimed at reducing economic burden. Many patients identified 4 major areas for improvement: insurance, supportive services and care, financial assistance, and protective policies.

Among the insurance challenges, common recommendations listed by patients included improvements in insurance navigation, quality of coverage, affordability of coverage, and access to lymphedema treatment.

One patient pointed to the expenses of garment supplies, such as wrappings and bandages, used to help self-manage lymphedema, which were not covered by insurance. She described forgoing self-management because of the cost.

“Although patients consistently suggested expanding what insurers cover, shifting costs back onto insurers may not be enough to reduce economic burden, especially if third-party payers find other ways to pass costs back to patients,” the study authors explained.

The researchers pointed to how coverage expansion for lymphedema services and treatment lowered patient out-of-pocket costs and related hospitalizations in 1 state, with a less than 0.1% effect on costs for insurance claims and less than 0.2 % effect on premiums after 10 years. However, widespread changes to insurance will require efforts made by patients, providers, insurers, state and federal policymakers, and the pharmaceutical industry, they wrote.

Secondly, patients suggested expanding supportive care and services, such as implementing support groups, expanding the availability of home care services, transportation programs, and domestic assistance.

Additionally, several respondents indicated the need for financial assistance, such as providing assistance for those above the poverty line, raising awareness about existing services, and financial counseling and planning. Patients noted that screening and referral to financial services during oncology visits early on in the cancer treatment process would be beneficial.

“Although physicians could provide a list of references for patients to seek financial counseling in their office, as patients suggested, this approach may increase their time costs,” the researchers wrote. “Therefore, automatic referral by the physician or by another member of the health care team to a program that is integrated within the health system may be more efficient.”

Lastly, protective policies surrounding employment and medical leave for women after breast cancer treatment was listed as a concern, as well. Redesigning these policies to better accommodate chronic disease needs could play a part in reducing the economic burden.

Overall, the researchers concluded that changes are needed to mitigate the rising out of pocket costs experienced by breast cancer survivors in the United States. Patient-driven recommendations provide insight into the needs of long-term cancer survivors beyond the direct medical expenses at the time of disease and can guide health care providers in efforts to ease their patients’ financial burden.


Dean LT, Moss SL, Rollinson SI, et al. Patient recommendations for reducing long-lasting economic burden after breast cancer. Cancer. March 6, 2019.