Background
In Australia, comprehensive data on the complete care trajectory for women living with and beyond breast cancer, including metastatic or recurrent disease pathways, remains limited. Understanding this trajectory is crucial for addressing unmet needs and improving support, particularly given rising survival rates.
Aim
We mapped patients’ lived experiences of treatment and service utilisation across the breast cancer care continuum, from initial diagnosis through surveillance, disease progression, recurrence, subsequent treatment, supportive, palliative, and end-of-life care.
Methods
We conducted five semi-structured focus groups in May 2024 with 32 women who were at least two years post-initial breast cancer diagnosis. Two consumer representatives with lived breast cancer experience contributed to the study design and participant recruitment strategy. Using qualitative framework analysis, we analysed participants’ experiences of treatment and service utilisation, including care sequence and timing.
Results
We identified four distinct patient typologies: non-metastatic, metastatic, recurrent non-metastatic, and recurrent metastatic. The care trajectory comprised five overarching phases of care: initial diagnosis and treatment planning, initial treatment, post-treatment care management and recovery, managing recurrent and progressive disease, and end-of-life care. Mapping these trajectories revealed common patterns and significant variations in treatment and service utilisation across typologies and care phases. The typologies shared initial phases of diagnosis, treatment planning, and active treatment with high service utilisation but diverged after based on disease status – with non-metastatic cases moving to recovery and follow-up (or returning to treatment if recurrence occurred), while metastatic cases progressed to ongoing, but fluctuating, disease management.
Conclusion
This trajectory mapping of women’s lived experiences illuminates patterns in treatment and service utilisation across different phases of care. These insights can inform health service and treatment planning to address patient needs and improve care visibility for women following initial diagnosis, particularly for those who experience recurrent and progressive disease.