Discontinuation and non-adherence to endocrine therapy in breast cancer patients: is lack of communication the decisive factor?

Non-adherence to anti-hormonal therapy is a major problem in gynecologic oncology. Reasons reported are side effects and lack of support. The aim of our study was an analysis of influence of experiences of patients with endocrine therapy and communication and information on this topic and their influence on adherence. We developed a structured questionnaire which was tested in a pilot version and then programmed as online questionnaire and presented to patient members of self-help and breast cancer organizations. Patients only had received scarce information on endocrine therapy. Only 12.8 % stated that their questions were answered in detail, 43.2 % got no answers or only non-detailed answers. 76 % had side effects limiting functions of daily life. 60 % of physicians did not react on these side effects. There is a significant correlation between number and intensity of side effects and non-adherence or disruption of therapy (p = 0.029 and p < 0.01, respectively). Women who reported having received detailed answers to their questions also reported better adherence (p = 0.014). In order to improve adherence, detailed information on side effects and answers in case of symptoms are most important. Physicians should not rely on presenting written information but should mainly engage in direct communication.