Breast Cancer Information Grand Round for Survivorship (BIG-S) prospective cohort

Existing evidence indicates that long-term effects of breast cancer treatment can significantly impact survivors’ ability to fulfill their personal, familial, and social roles. However, few studies comprehensively integrate patient-reported outcomes (PROs) and real-world healthcare utilization data, particularly in Asian populations. Thus, we established a prospective cohort, the Breast Cancer Information Grand Round for Survivorship (BIG-S), to address these gaps and introduce this resource. The prospective BIG-S cohort recruited patients newly diagnosed with breast cancer at Samsung Medical Center starting in November 2018. Clinical data, recurrence, and healthcare utilization were systematically collected from electronic medical records by trained researchers, and body composition was measured using multifrequency bioelectrical impedance analysis. PROs were assessed following recommendations from the International Consortium for Health Outcomes Measurement (ICHOM). These included health-related quality of life, physical, psychological, social, and cognitive functions, symptoms, healthy behaviors, financial difficulty, spiritual well-being, and cancer adaptation, using validated questionnaires. A total of 2,749 patients participated, with an average age of 49.7 years. The mean quality-of-life score at diagnosis was 55.6, indicating moderate general well-being, and improved gradually to 68.2 at four years post-diagnosis. At baseline, participants showed high physical, cognitive, and role functioning scores but had relatively lower emotional and social functioning scores. Over four years, emotional and social functioning improved, whereas cognitive and role functioning declined. Survivors initially reported low sexual functioning, sexual enjoyment, and future perspectives, all of which significantly decreased during follow-up. Fatigue and insomnia were persistent throughout the observation period. Healthcare utilization initially concentrated on plastic surgery and rehabilitation medicine and increasingly shifted towards gynecology, family medicine, and psychiatry after two years. The BIG-S cohort uniquely integrates clinical data, PROs, and healthcare utilization patterns, offering comprehensive insights into breast cancer survivorship trajectories. Findings from BIG-S are expected to guide targeted interventions and inform tailored survivorship care strategies, especially for Asian breast cancer survivors.