Women’s Insights on Extended Adjuvant Endocrine Therapy for Breast Cancer: Qualitative Online Forums Study

Background: In France, breast cancer is the most commonly diagnosed cancer and the leading cause of cancer-related death among women. 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 aimed 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 share throughout the treatment journey. Methods: A qualitative content analysis was conducted using data from five French online forums over a ten-year period. We employed a non-participant observational approach to identify relevant posts and gain a deeper understanding of forum dynamics related to extended AET. Data were collected in March 2025. After applying inclusion and exclusion criteria, 188 messages posted by 105 women were selected. A netnographic approach, derived from ethnography and suited to exploratory research, was used in conjunction with Braun and Clarke’s six-phase framework for thematic analysis, integrating 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. Some women on extended AET shared resilient and encouraging experience, providing reassurance and practical strategies for coping with side effects. Conclusions: Online forums offer valuable insights into women’s experiences, unmet information needs, uncertainties and coping strategies surrounding extended AET, contributing to addressing a gap in knowledge on how women perceive and manage long-term treatment. 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. With growing numbers of women in long-term treatment, enhanced coordination between primary care and hospital services, including follow-up by trained general practitioners, gynecologists in collaboration with cancer centers may help ensure continuity of care and comprehensive support.