Understanding barriers to tamoxifen adherence in women with breast cancer: a qualitative study

Abstract

Background: Up to half of patients do not take tamoxifen as prescribed, which is associated with increased odds of recurrence and mortality in breast cancer survivors. However, little research has investigated factors that contribute to/reasons for non-adherence from the patient perspective. This study aimed to understand womens’ experiences of tamoxifen and to identify factors which may be associated with non-adherence. Method: Semi-structured interviews were conducted with thirty-two breast cancer survivors who had been prescribed tamoxifen. Interviews were conducted face to face or over the telephone. They were transcribed verbatim, and analysed using inductive thematic analysis with elements of grounded theory. Findings: A key theme identified in the data was weighing up beliefs about treatment, which resulted in women being categorised into three groups; tamoxifen is keeping me alive, tamoxifen is not worth the reduced risk of recurrence, or conflicting beliefs. Additional themes were risk of recurrence and information & support. Discussion: Women who believed that the necessity of tamoxifen outweighed its costs reported better adherence, whereas those who thought that the benefits did not outweigh the side-effects were more likely to have discontinued. A third more ambivalent group believed strongly in the importance of treatment, but were struggling with side-effects and were often non-adherent, reporting skipping and adjusting doses. Women described a lack of comprehensive information and support. To reduce non-adherence and discontinuation, future research needs to explore ways to increase beliefs around tamoxifen necessity and help women cope with side-effects, particularly in those with ambivalent feelings towards tamoxifen.