Physical Activity and Lymphedema (PAL) Social and Economic Quality of Life (SEQL) Study, Pennsylvania and New Jersey, 2015-2016

Upper body breast-cancer related lymphedema (BCRL) is a persistent adverse outcome of cancer treatment that affects the physical health and quality of life of up to 1 in 3 of the 2.9 million breast cancer survivors in the US. For those with BCRL, known predictors of progression include BMI, type of surgery and radiation treatment, all of which are associated with social factors. This study was designed to examine the role of finances in long-term BCRL management and progression, and compare the financial experiences of patients managing BCRL to those who do not. In 2016, the study team conducted 40 interviews with women living in Philadelphia and New Jersey, half of whom had BCRL and half who were breast cancer survivors who had not been diagnosed with BCRL. Participants were sampled from a larger longitudinal study collecting quantitative data on patient's healthcare spending over the course of a year. At the 6-month time point, 40 participants were selected randomly within strata of race, age, and socioeconomic position for 30-minute semi-structured interviews on changes in their economic situation as a result of breast cancer treatment, when applicable, both cancer treatment and ongoing BCRL management. Questions were designed to cover the ways in which costs for treatment affected the patient, their family, and their anticipated future behaviors around health or finance. Themes include interactions with insurance companies, costs of medications, and charitable support services for assisting with breast cancer and BCRL financial costs.