Unmet needs of women living with breast cancer-related lymphoedema

Abstract

Breast cancer-related lymphoedema (BCRL) occurs as a side effect of breast cancer treatments. BCRL is chronic, progressive and varies in presentation and severity. It has been shown to have many impacts on a woman's quality of life which have led to unmet needs.

Chapter 2 aimed to identify the needs of women living with BCRL, if these needs had changed over time, and if severity of BCRL affected needs. An online study of women living with BCRL was conducted. Two valid and reliable tools were used to assess severity and needs. Financial need was rated highest in all severity groups. High needs were also reported in the domains of the healthcare system, psychological, information and support, physical, and body image. It was found that as the severity of breast cancer-related lymphoedema increased, so did the needs.

Chapter 3 is a systematic review that aimed to identify direct and indirect costs of treating BCRL, to both women and the healthcare system. A secondary aim was to determine if the severity of BCRL impacted the costs. Only one study investigated the direct and indirect costs of treating BCRL, AU$4534.10 (US$3325). The direct average yearly out-of-pocket cost for women ranged from AU$977 (US$716.20) to AU$3145.57 (US$2306). The average cost to the healthcare system ranged from AU$118,081.28 (US$86,707) to AU$192,872.52 (US$141,388) over two years. One study identified as the severity of BCRL increased, so did the cost. One modelling study found surgical treatment, plus a course of complex decongestive therapy was the most expensive treatment to the healthcare system. The other study reported the cost of a traditional model of lymphoedema treatment model was higher than that of a prospective surveillance model of care.

Women with BCRL have many needs, of which financial were rated most commonly. Women with severe BCRL are rating these needs at a higher rate and treatment at a higher cost. However, the true cost of BCRL is still unknown.