Extending Adjuvant Endocrine Therapy for 10 Years: A Mixed-Methods Analysis of Women’s Decision Making in an Online Breast Cancer Forum

An additional 5 years of treatment with adjuvant hormonal therapy, to complete 10 years of medication, is recommended to reduce the risk of breast cancer recurrence. Yet professionals and patients should balance this benefit against side effects and toxicities. Little is known about women’s decision making regarding persistence with extended endocrine therapy. In this study, we collected data from a UK online breast cancer forum to analyse patterns of persistence and its associated factors. A mixed-methods exploratory sequential design was used, with a qualitative analysis of text (n = 61 individuals) informing the development of a quantitative instrument to statistically analyse the prevalence of the findings (n = 130). Our findings identified three different groups of women who had to make decisions regarding persistence with treatment: those about to complete 5 years of therapy, those who decided to extend treatment, and those who were initially prescribed 10 years. Factors affecting persistence were, lack of self-efficacy in managing side effects, lack of reassurance about individual risk of recurrence, and impact on quality of life. Interventions such as training of healthcare professionals including risk communication, medication reviews by clinical pharmacists, and re-planning of services in follow-up care, should better support women’s needs in extended hormonal therapy.