Long-term breast cancer survivors: experiences, needs, and proposals for person-centred care.

PURPOSE: Long-term breast cancer survivors experience permanent effects of cancer treatment such as reduced strength, aerobic capacity, and mobility, as well as cognitive, cardiac, or neurotoxic complications. This study aims to characterise the experience and needs of breast cancer survivorship care and to examine its alignment with the person-centred care model, based on the perspectives of long-term breast cancer survivors and the multidisciplinary professionals involved in their care.

METHODS

This study co-created, with long-term breast cancer survivors and healthcare professionals, a patient journey map to visually describe their experiences. Healthcare-related needs were also prioritised, and solutions to improve health services were proposed.

RESULTS

Person-centred care in breast cancer survivorship is yet to be fully implemented. Five relevant areas of care were identified through independent focus groups and workshops: early recurrence detection, monitoring of potential physical consequences, psychological health, employment-related aspects, and healthy lifestyles. Being involved in the decision-making process and being listened to were identified as priority needs by patients. Meanwhile, healthcare professionals stressed the importance of improving communication with patients. Psychological support and care coordination were among the most important needs for both patients and healthcare professionals.

CONCLUSION

Potential solutions to address these needs included improving access to information and communication channels, increasing resources (such as rehabilitation, psychotherapy, case managers, and direct scheduling), and strengthening support for healthy lifestyle and employment, as well as creating specific training for healthcare professionals. Experiences and care needs of long-term breast cancer survivors were visualised in the patient journey map, which can be used for service redesign.