Lymphedema Education Advocacy Program (LEAP): Addressing Gaps in Patient Education of Breast Cancer-Related Lymphedema (BCRL)

Breast cancer-related lymphedema (BCRL) is a noncurable condition that is underdocumented and underrecognized. This study assesses the effectiveness of BCRL education at the first postoperative visit, via qualitative research methods, with the goal of establishing an effective BCRL educational protocol. We hypothesized that the current BCRL education provided is insufficient, and patients would benefit from a standardized, more comprehensive educational protocol to improve BCRL understanding. Patients received standardized written educational materials about BCRL in the preoperative setting. Participants in this study were patients who had a sentinel lymph node biopsy or axillary lymph node dissection. Semi-structured interviews were conducted during postoperative appointments. The purpose was to identify knowledge gaps, emotional responses, follow-up preferences, and preferred educational methods among patients. Data were analyzed using manual qualitative research methods to derive themes. Sixteen patients participated in interviews during June-September 2024, with a median age of 53 y (range 29-67 y). Of the participants, 31% were African American/Black and 69% were Caucasian, with 6% identifying as Hispanic. Thirteen patients (81%) underwent breast-conserving surgery and three (19%) underwent mastectomy; 88% underwent sentinel lymph node biopsy and 13% underwent axillary lymph node dissection. Themes that emerged included (1) familiarity with lymphedema, (2) understanding lymphedema risk, (3) receiving contradictory information, (4) emotional distress, (5) recognizing varying preferences for educational materials, and (6) acknowledging varying levels of medical literacy. This study highlights the importance of health-care providers delivering timely and personalized BCRL education, along with continued education and counseling during survivorship.