Mapping Longitudinal Breast Cancer Care Trajectories: Treatment and Service Utilisation Experiences of...

Women across the breast cancer continuum navigate diverse care pathways, yet there is limited understanding of longitudinal care trajectories, particularly for recurrent and metastatic disease. Pathway research has predominantly focused on quantitative service utilisation, overlooking patients' experiential navigation of care.

This study explored the lived experiences of key events and phases throughout the breast cancer care trajectory through treatment and service utilisation patterns.

Thirty-two women, at least 2 years post-initial breast cancer diagnosis, participated in semi-structured focus groups. Participants were recruited from cancer consumer forums across Australia and grouped by typology based on cancer stage and recurrence status. Using qualitative framework analysis and a micro-to-macro analytical approach, we analysed participants' treatment and service utilisation experiences to construct typological timelines and develop a generalised typology care trajectory map.

We identified four typologies among participants: non-metastatic, de novo metastatic, recurrent non-metastatic, and recurrent metastatic. Five overarching care phases emerged: initial diagnosis and treatment planning, initial treatment, post-treatment care management and recovery, managing recurrent and progressive disease, and end-of-life care. Trajectory mapping revealed fundamentally non-linear pathways with frequent cycling between phases, particularly for metastatic disease. Patient-described care phases differed significantly from clinical pathway terminology, revealing critical care coordination gaps during vulnerable transitions.

The trajectory map provides valuable insights into experiential care patterns, revealing gaps between clinical pathways and patient experiences. These findings can inform health service planning, improve care coordination during transitions, and enhance visibility of care needs in recurrent and metastatic disease.