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

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.

Self‐reported signs and symptoms of secondary upper limb lymphoedema related to breast cancer treatment: Systematic review

“…Risk of bias of the included studies ranged from 30% to 90%: a high risk of bias was found for seven studies (Ahmed et al, 2008; Fu et al, 2018; Kopec et al, 2013; Kosir et al, 2001; Morris et al, 2017; Ridner & Dietrich, 2015; Ridner et al, 2011), a moderate risk of bias for 13 studies (Armer et al, 2003; Bani et al, 2007; Finlay et al, 2013; Flores et al, 2020; Gartner et al, 2010; Gençay Can et al, 2019; Hidding et al, 2019; Honarvar et al, 2016; Mak et al, 2009; Norman et al, 2009; Ridner et al, 2007; Sierla et al, 2013; Suehiro et al, 2019), and a low risk for bias for nine studies (Armer, Ballman, McCall, Armer, et al, 2019; Armer, Ballman, McCall, Ostby, et al, 2019; Armer & Fu, 2005; Brunelle et al, 2020; Bundred et al, 2020; Cidon et al, 2011; Fu et al, 2015; Hayes et al, 2008; Korucu et al, 2020; Svensson et al, 2020; Table 1). Based on the 2005 classification system of the Dutch Institute for Healthcare Improvement, the level of evidence was determined to be “B” for 17 studies with a comparative design (Ahmed et al, 2008; Armer, Ballman, McCall, Armer, et al, 2019; Armer, Ballman, McCall, Ostby, et al, 2019; Armer & Fu, 2005; Armer et al, 2003; Bani et al, 2007; Brunelle et al, 2020; Bundred et al, 2020; Flores et al, 2020; Fu et al, 2015, 2018; Honarvar et al, 2016; Korucu et al, 2020; Mak et al, 2009; Norman et al, 2009; Ridner et al, 2007; Sierla et al, 2013; Svensson et al, 2020) and “C” for 12 non‐comparative studies (Cidon et al, 2011; Finlay et al, 2013; Gartner et al, 2010; Gençay Can e...…”

“…The designs of the included studies were as follows: 11 longitudinal cohort (Armer, Ballman, McCall, Armer, et al, 2019; Armer, Ballman, McCall, Ostby, et al, 2019; Brunelle et al, 2020; Bundred et al, 2020; Cidon et al, 2011; Finlay et al, 2013; Gençay Can et al, 2019; Hayes et al, 2008; Hidding et al, 2019; Kosir et al, 2001; Norman et al, 2009; Suehiro et al, 2019; Table 3), 15 cross‐sectional (Ahmed et al, 2008; Armer & Fu, 2005; Armer et al, 2003; Bani et al, 2007; Flores et al, 2020; Fu et al, 2015, 2018; Gartner et al, 2010; Kopec et al, 2013; Morris et al, 2017; Ridner & Dietrich, 2015; Ridner et al, 2011; Ridner et al, 2007; Sierla et al, 2013; Svensson et al, 2020; Table 4) and three case–control studies (Honarvar et al, 2016; Korucu et al, 2020; Mak et al, 2009; Table 5). Studies were mainly from the USA ( n = 13, 45%; Ahmed et al, 2008; Armer, Ballman, McCall, Armer, et al, 2019; Armer, Ballman, McCall, Ostby, et al, 2019; Armer & Fu, 2005; Armer et al, 2003; Brunelle et al, 2020; Flores et al, 2020; Fu et al, 2015, 2018; Kosir et al, 2001; Norman et al, 2009; Ridner & Dietrich, 2015; Ridner et al, 2007, 2011) and Australia ( n = 5, 17%; Finlay et al, 2013; Hayes et al, 2008; Morris et al, 2017; Sierla et al, 2013; Svensson et al, 2020).…”

“…The Norman Questionnaire was used for both diagnosis of ULL and self‐reported symptoms in two included studies (Ahmed et al, 2008; Norman et al, 2009). Twelve studies (Bani et al, 2007; Cidon et al, 2011; Finlay et al, 2013; Flores et al, 2020; Gartner et al, 2010; Gençay Can et al, 2019; Hayes et al, 2008; Honarvar et al, 2016; Kopec et al, 2013; Korucu et al, 2020; Sierla et al, 2013; Svensson et al, 2020) assessed self‐reported symptoms by a self‐developed questionnaire or questions. The assessment method for the signs and symptoms of ULL was not indicated in one study (Kosir et al, 2001).…”

“…Four studies based ULL diagnosis on a subjective assessment of ULL, namely the Norman Questionnaire (Ahmed et al, 2008; Norman et al, 2009; Sierla et al, 2013) and a self‐developed questionnaire (Bani et al, 2007). Four studies also used patient‐reported ULL status (Cidon et al, 2011; Flores et al, 2020; Fu et al, 2018; Gartner et al, 2010) based on the presence of subjective sensations of swelling, heaviness and/or tiredness (Cidon et al, 2011; Gartner et al, 2010) or a previous history of ULL diagnosis or treatment (Flores et al, 2020; Fu et al, 2018). The assessment method for the identification of the presence of ULL was not indicated in two studies (Ridner & Dietrich, 2015; Ridner et al, 2011).…”

“…Five longitudinal studies investigated predictive symptoms for the development of ULL (measured using perometry, BIS, circumference measurement or valid/reliable questionnaire; aim 2; Brunelle et al, 2020; Bundred et al, 2020; Hayes et al, 2008; Hidding et al, 2019; Norman et al, 2009). Twelve studies indicated the associations between the presence/severity of self‐reported symptoms and the presence/severity of ULL as determined by objective measurements (Armer et al, 2003; Brunelle et al, 2020; Bundred et al, 2020; Finlay et al, 2013; Flores et al, 2020; Fu et al, 2015; Gençay Can et al, 2019; Hidding et al, 2019; Mak et al, 2009; Ridner et al, 2007; Suehiro et al, 2019; Svensson et al, 2020; aim 3).…”