The Patient’s Voice: Adherence, Symptoms, and Distress Related to Adjuvant Endocrine Therapy After Breast Cancer

While adjuvant endocrine therapy (AET) for early-stage, hormone-sensitive breast cancer confers a 40–50% reduction in recurrence risk, adherence to AET is suboptimal, and no efficacious interventions exist to improve adherence. A qualitative study was conducted to understand patient experiences on AET, motivators and barriers to adherence, side effects, and distress, with the goal of developing a patient-centered, evidence-based intervention. From November 2017 to November 2018, female patients with early-stage, hormone receptor–positive breast cancer taking AET were recruited. Patients with low and high medication adherence of varying ages, levels of distress, and years taking AET were purposefully enrolled. In-depth semi-structured interviews were conducted, audio recorded, and transcribed. Study staff created a thematic framework, and three independent researchers coded interviews using NVivo 11, achieving high inter-coder agreement (Kappa = .96). Thirty interviews were conducted with patients who were, on average, 55.13 years old (SD = 12.37) and had been taking AET for a mean of 1.76 years (SD = 0.75). The sample was stratified by adherence level (low = 20; high = 10). Recurrent themes related to adherence included a commitment to AET to prevent recurrence despite distressing side effects, lack of strategies to cope with symptoms and distress, and desire for emotional support from others taking AET. Patients were highly accepting of a proposed psychosocial intervention to manage AET. Patients are committed to taking AET to prevent breast cancer recurrence, but need and desire psychosocial support and skills training. Themes from this study are modifiable targets for a psychosocial, evidence-based intervention to promote adherence, coping with side effects, and distress management.