“I did not need anything else to make me feel bad”: The precarious paradox of Breast Cancer Survivors’ adherence to adjuvant endocrine therapy

Abstract

Adherence to adjuvant endocrine therapy (AET) is a critical problem in the treatment of hormone receptorpositive (HR+) breast cancer (BC). More than half of women discontinue AET prior to the end of the recommended 5-year course of therapy. The purpose of this study was to assess the feasibility of engaging women in research who prematurely discontinued AET and to describe their experiences with AET to inform future interventions. MethodsA mixed-methods pilot study was nested within a larger observational trial of women with HR + BC (N = 594). Women who discontinued therapy were systematically identi ed over 24 months; quantitative surveys and in-depth interviews were conducted. Paired t-tests were used to compare the mean difference in psychosocial factors and medication-related symptoms between baseline and discontinuation timepoints.In-depth open-ended interviews were audio-recorded, transcribed verbatim, and analyzed using the NVivo software program. ResultsMost women (90%) who discontinued AET during the observational period participated in the study (N = 37). Women's ages ranged from 46 to 78 years old (m = 60.1); 62.2% were White, 29.7% were Black and the remaining women identi ed as being from other racial/ethnic groups. Few differences were noted between women who did and did not discontinue AET. Most women (84%) reported AET-side effects as a reason for discontinuation. Among those who discontinued, the reported vasomotor symptoms were lower at discontinuation compared to the rst symptom assessment (P = 0.0047). Qualitative data suggested frustration with strategies to address symptoms, being unprepared for the intensity of symptoms, and a desire for better patient-provider communication. 69.2% of women reported that would be willing to consider restarting AET if barriers were removed. ConclusionMost women were willing to restart AET. Capturing women's experiences while on treatment and their discontinuation in real-time may help women prevent discontinuation, enhance the quality of life and prevent worsening of medication-related symptoms. Interventions that integrate patients' concerns with symptom management and enhance patient-physician communication may support AET adherence.