Lymphedema therapy referral is associated with improved understanding of lymphedema prevention among breast cancer survivors

Purpose: Lymphedema is common among breast cancer survivors (BCS) and negatively affects quality of life. There are modifiable factors to reduce lymphedema risk and exacerbation; it is unknown how aware survivors are of these factors. We hypothesized referral to lymphedema therapy (LT) to be associated with greater lymphedema knowledge. Methods: BCS at an NCI-designated cancer center between 2014-2015 were asked to complete an anonymous questionnaire. Eligibility criteria were the following: age ≥18, female sex, English-speaking, > 6 months post definitive breast cancer surgery, no cancer recurrence, and no prior or subsequent second cancer. The questionnaire included sociodemographics, clinical factors including LT referral, and 10 true/false questions assessing lymphedema knowledge. Multivariable logistic regressions assessed the relationship between prior LT referral and correctly answering questions about lymphedema misconceptions. Results: Of 209 participants, 53 (25%) had been referred to LT. Those who had sentinel lymph node dissection were less frequently referred to LT [15 (14%)] than those who had axillary lymph node dissection [38 (39%)]. Five of the true/false questions had a correct response rate of <80%. In multivariable regression adjusted for age, race/ethnicity, education, axillary surgery, and radiation therapy, LT referral was associated with answering the questions about weight gain and exercising the arm on an airplane correctly [weight gain: odds ratio, 95% confidence interval (OR, 95%CI): 3.63 (1.66-7.96), airplane: 2.65 (1.15-6.13)]. Conclusion: Misconceptions surrounding lymphedema prevention and management are common among BCS. LT referral is a potential opportunity to debunk common misunderstandings regarding lymphedema risk reduction.