‘Patients are left not knowing’: Trastuzumab (Herceptin) cardiac risk information and management in HER2-positive breast cancer—a qualitative study of patient experience

PURPOSE: The current study investigated the extent of knowledge and care regimen regarding the possible risks of cardiac dysfunction from Trastuzumab (Herceptin) treatment in women with either a diagnosis of primary or metastatic breast cancer who had undergone or were receiving Trastuzumab at the time of the study. METHOD: In a qualitative interview, participants were asked questions regarding awareness of cardiac risks of Trastuzumab therapy and knowledge of cardiac damage symptoms, as well as questions concerning the regimen of heart function monitoring during and beyond their course of treatment. Thematic analysis was used to analyse the data. RESULTS: The emerging themes from the thematic analysis revealed inconsistencies in (a) knowledge and awareness of cardiac damage risk prior to taking Trastuzumab, (b) monitoring of cardiac function and risks of cardiac dysfunction during and beyond treatment, and (c) awareness of signs of possible cardiac damage of Trastuzumab during treatment. CONCLUSIONS: Our results suggest that patients feel unsupported and ill-informed about the possible risks of cardiac damage from Trastuzumab. This has implications for the self-management of symptoms and mitigation of risks for cardiac damage and suggests the need for improvement in patient care.