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Support Care Cancer. 2018 Aug 18. doi: 10.1007/s00520-018-4418-4. [Epub ahead of print]

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

Author information

1
Department of Epidemiology, Johns Hopkins Bloomberg School of Public Health, Johns Hopkins University, 615 N Wolfe St, E6650, Baltimore, MD, 21205, USA. ldean9@jhu.edu.
2
Department of Oncology, Johns Hopkins School of Medicine, Baltimore, MD, USA. ldean9@jhu.edu.
3
Department of Epidemiology, Mailman School of Public Health, Columbia University, New York, NY, USA.
4
Department of Social & Behavioral Sciences, Yale School of Public Health, New Haven, CT, USA.
5
Department of Health Policy & Management, Johns Hopkins Bloomberg School of Public Health, Johns Hopkins University, Baltimore, MD, USA.
6
Department of General Internal Medicine, University of Pennsylvania Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA.
7
Department of Epidemiology, Johns Hopkins Bloomberg School of Public Health, Johns Hopkins University, 615 N Wolfe St, E6650, Baltimore, MD, 21205, USA.
8
Department of Oncology, Johns Hopkins School of Medicine, Baltimore, MD, USA.
9
Department of Public Health Sciences, Pennsylvania State University College of Medicine, Pennsylvania State University, Hershey, PA, USA.

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

PMID:
30121786
DOI:
10.1007/s00520-018-4418-4

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