Women's Insights on Extended Adjuvant Endocrine Therapy for Breast Cancer: a Qualitative Online Forums Study (Preprint)

BACKGROUND For around one third of women with hormone receptor-positive breast cancer, extending adjuvant endocrine therapy (AET) beyond the initial 5-year is now recommended to reduce the risk of recurrence and mortality. While weighing benefits against potential side effects is essential, little is known about how women seek information about extended AET or how they experience this extension. OBJECTIVE This study aims to explore, through online forums, women’s unmet information needs, the factors influencing their decision-making around extended AET and the needs and expectations they express throughout the treatment journey. METHODS Data were collected from five French online forums, using a non-participant observational approach to understand forum dynamics and identify relevant posts. After applying inclusion and exclusion criteria, 188 messages from 105 women were selected for thematic analysis, combining both inductive (narrative-based) and deductive (literature-informed) approaches. RESULTS Our findings showed that women turned to forums to seek information about extended AET both from medical and non-expert sources. However, they often reported difficulties in interpreting complex or inconsistent information. Understanding and acceptance of treatment extension were influenced by the timing and manner of information disclosure. Three decision-making patterns were identified: 1) acceptance, 2) hesitation, and 3) refusal, which could shift over time, shaped by factors such as fear of recurrence, side effect experience and management, trust in treatment effectiveness, interactions with healthcare professionals, and life changes. The analysis highlighted the role of forums as spaces for sharing experiences and coping strategies related to extended AET. CONCLUSIONS Online forums offer valuable insights into women’s unmet information needs, and uncertainties surrounding extended AET. Providing clear, accessible information and tailored communication tools, especially on benefit-risk balance and side effects management, at the time of prescription and at key points along the care pathway, may support informed decision-making, improve treatment adherence, maintain quality of life, and offer reassurance CLINICALTRIAL N/A