Abstract

Lymphedema Signs, Symptoms, and Diagnosis in Women Who Are in Minority and Low-Income Groups and Have Survived Breast Cancer

Ann Marie Flores, Jason Nelson, Lee Sowles, Rebecca G. Stephenson, Kathryn Robinson, Andrea Cheville, Antoinette P. Sander, William J. Blot. Physical Therapy , 2020. Volume 100 Number 3

Background Breast cancer–related lymphedema (BCRL) is a well-known side effect of cancer and its treatment with wide-ranging prevalence estimates.

Objective This study describes associations between breast cancer-related lymphedema (BCRL) signs, symptoms, and diagnosis for women who were African American, white, or had a low income and survived breast cancer.

Design This is a cross-sectional, observational study that used a computer-assisted telephone interview.

Methods Women who had survived breast cancer were queried on the presence of 5 lymphedema signs and symptoms (edema in the breast, axilla, arm, and/or hand; tissue fibrosis; pitting; hemosiderin staining; heaviness) and whether they had a diagnosis of BCRL. Relationships between signs/symptoms and diagnosis for each group were evaluated with kappa and chi-square statistics.

Results The study sample included 528 women who had survived breast cancer (266 white and 262 African American), with 514 reporting complete data on household income; 45% of the latter reported an annual household income of ≤$20,000. Women who were African American or had a low income were nearly twice as likely as women who were white to have any of 8 signs/symptoms of BCRL. Regardless of race and income, >50% of women with all BCRL signs and symptoms reported that they were not diagnosed with BCRL.

Limitations The main limitations of our study are the lack of medical chart data and longitudinal design.

Conclusions Women who were African American or had a low income and had survived breast cancer had a greater burden of BCRL signs and symptoms than women who were white. The lack of a strong association between BCRL signs, symptoms, and diagnosis suggests that BCRL may be underdiagnosed. These findings suggest that more rigorous screening and detection of BCRL—especially for women who are African American or have a low income—may be warranted. Cancer rehabilitation programs may be able to fill this gap.

Main findings

• Survey Instrument. All written materials for this study, including the survey, had a readability level no higher than the eighth-grade level.
• The survey questionnaire included items from the published literature about lymphedema signs and symptoms and are part of the ISL criteria for lymphedema diagnosis. They also asked each participant whether she had been diagnosed with BCRL by her doctor. The survey queried participants about sociodemographic characteristics.
• This cross-sectional study was designed to examine whether disparities in self-reported signs, symptoms, and diagnosis of BCRL existed among women who were African American, white, or had a low income and who had survived breast cancer.
• This study shows that African Americans and those with low income levels in our sample were more likely to have nearly all patient-reported signs and symptoms of lymphedema—upper quarter edema, tissue hardening (ie, fibrosis), and skin darkening (ie, hemosiderin staining)—but less likely to be diagnosed with BCRL when compared to those who are white and/or with higher incomes.
• A recent case series studied a small sample of breast cancer survivors (n = 9) at risk of developing BCRL suggested that hand edema may be a risk factor for the development of BCRL.
• The results suggest that more research is needed on the differential role of edema in the axilla, breast, arm and/or hand as risk factors for development of BCRL.
• These findings support literature that shows consistent trends of the poor bearingthe highest burden of cancer mortality, advanced stage cancers, and health care related financial debt regardless of race or ethnic background. Living in an economically impoverished neighborhood appears to be associated with lower physical functioning, diminished physical activity, and high body mass index. This study suggests that those with low incomes might need more targeted and programmatic approaches regarding monitoring and risk reduction for BCRL.
• Despite the fact that previous studies have shown a relationship between BMI and lymphedema this study did not find that BMI was related to whether a participant reported having been diagnosed with breast cancer related lymphedema (results not shown).
• Although the number of removed lymph nodes vary widely in the development of BCRL, to date, there is no set threshold on the number of nodes that will predict the development of BCRL.
• This study suggests that women who are African American or have a low income and have survived breast cancer disproportionately report BCRL signs and symptoms and diagnosis. However, BCRL diagnosis did not seem related to the presence of signs and symptoms of BCRL. Whether a similar relationship exists in terms of lymphedema treatment utilization is not known at this time and is the next step of their research. The study suggests that self-reported signs and symptoms of BCRL may be more prevalent than previously thought among African Americans and those with low income levels. Broadly speaking, it seems that African Americans, and especially those with low incomes, might bear a much greater burden of breast cancer and its side effects than previously known.