Ann Marie Flores1, Jason Nelson2, Lee Sowles3, Rebecca G Stephenson4, Kathryn Robinson5, Andrea Cheville6, Antoinette P Sander7, William J Blot8. 1. Departments of Physical Therapy and Human Movement Sciences and Medical Social Sciences, Northwestern University, Chicago, Illinois; Cancer Survivorship Institute, Robert H. Lurie Comprehensive Cancer Center of Northwestern University, Chicago, IL 60611 (USA). 2. Biostatistics Research Center, Institute for Clinical Research and Health Policy Studies, Tufts University Medical Center, Boston, Massachusetts. 3. OmKids, Portland, Maine. 4. Department of Rehabilitation Services, Brigham and Women's Hospital, Boston, Massachusetts. 5. School of Nursing, University of Maine, Orono, Maine. 6. Department of Physical Medicine and Rehabilitation, Mayo Clinic, Rochester, Minnesota. 7. Department of Physical Therapy and Human Movement Sciences and Medical Social Sciences, Northwestern University. 8. International Epidemiology Institute, Rockville, Maryland; and Vanderbilt-Ingram Cancer Center, Vanderbilt University Medical Center, Nashville, Tennessee.
Abstract
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.
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.
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