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

Lorraine T. Dean, Shadiya L. Moss, Yusuf Ransome, Livia Frasso-Jaramillo, Yuehan Zhang, Kala Visvanathan, Lauren Hersch Nicholas, Kathryn H. Schmitz

Research output: Contribution to journalArticle

5 Citations (Scopus)

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.

Original languageEnglish (US)
Pages (from-to)1697-1708
Number of pages12
JournalSupportive Care in Cancer
Volume27
Issue number5
DOIs
StatePublished - May 1 2019

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Lymphedema
Economics
Health Expenditures
Survivors
Insurance
Breast Neoplasms
Neoplasms
Costs and Cost Analysis
Breast Cancer Lymphedema
Interviews
Retirement
Comorbidity
Demography

All Science Journal Classification (ASJC) codes

  • Oncology

Cite this

Dean, Lorraine T. ; Moss, Shadiya L. ; Ransome, Yusuf ; Frasso-Jaramillo, Livia ; Zhang, Yuehan ; Visvanathan, Kala ; Nicholas, Lauren Hersch ; Schmitz, Kathryn H. / “It still affects our economic situation” : long-term economic burden of breast cancer and lymphedema. In: Supportive Care in Cancer. 2019 ; Vol. 27, No. 5. pp. 1697-1708.
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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.",
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Dean, LT, Moss, SL, Ransome, Y, Frasso-Jaramillo, L, Zhang, Y, Visvanathan, K, Nicholas, LH & Schmitz, KH 2019, '“It still affects our economic situation”: long-term economic burden of breast cancer and lymphedema', Supportive Care in Cancer, vol. 27, no. 5, pp. 1697-1708. https://doi.org/10.1007/s00520-018-4418-4

“It still affects our economic situation” : long-term economic burden of breast cancer and lymphedema. / Dean, Lorraine T.; Moss, Shadiya L.; Ransome, Yusuf; Frasso-Jaramillo, Livia; Zhang, Yuehan; Visvanathan, Kala; Nicholas, Lauren Hersch; Schmitz, Kathryn H.

In: Supportive Care in Cancer, Vol. 27, No. 5, 01.05.2019, p. 1697-1708.

Research output: Contribution to journalArticle

TY - JOUR

T1 - “It still affects our economic situation”

T2 - long-term economic burden of breast cancer and lymphedema

AU - Dean, Lorraine T.

AU - Moss, Shadiya L.

AU - Ransome, Yusuf

AU - Frasso-Jaramillo, Livia

AU - Zhang, Yuehan

AU - Visvanathan, Kala

AU - Nicholas, Lauren Hersch

AU - Schmitz, Kathryn H.

PY - 2019/5/1

Y1 - 2019/5/1

N2 - 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.

AB - 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.

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