Breast cancer follow-up: current state of personalization and opportunities for improvements

Objective: Breast cancer follow-up can be divided into surveillance and aftercare. The need for personalization of follow-up is widely recognized, but current guidelines on surveillance follow a ‘one-size fits all’ approach and lack specific recommendations on personalization of aftercare. As it remains unclear to what extent current clinical practice still follows a generic approach or already adopted personalization, this study investigates the extent to which current surveillance and aftercare is personalized to patients’ individual needs and risks. Variations in needs assessments, information provision and decision-making on the surveillance and aftercare trajectory are assessed.

Method: Semi-structured in-depth group interviews were performed in fifteen Dutch hospitals, with in total 29 Health Care Practitioners (HCPs). A self-administered questionnaire including both closed and open questions was used as an interview guide. To describe variations and degree of personalization in follow-up, quantitative answers were supported by citations from transcripts, using a deductive approach.

Results: Surveillance was mostly guided by the national guideline and generally not based on patients’ needs, preferences or risks on recurrence. HCPs exceptionally deviated from the guideline by providing more surveillance because of patients’ distress and preference. In aftercare, patients’ needs and preferences were taken into account in decisions on the intensity of consultations, but needs were not systematically assessed. Besides, hospitals varied in the intensity of consultations and use of measurements to assess patients’ needs. Information provision was mostly the same for each patient. Aftercare plans were mostly either not used or used as standard summary form which was not tailored to the patients’ specific situation. Current decision-making on the surveillance and aftercare trajectory is mostly controlled by HCPs with no or little involvement of patients, but HCPs preferred more shared decision-making.

Conclusions: Current follow-up is not structurally personalized to patients’ prognoses, needs and preferences, and variations between hospitals in their aftercare suggest hospitals are independently searching for a way to personalize aftercare. Aftercare could be more personalized by systematic assessment of patients’ needs and tailored information provision on effects of cancer and its treatment as well as on aftercare options. Guidance on shared decisions on the intensity of aftercare and needed support and personalization of the surveillance based on risk-estimations and needs-assessments is desirable. Also the use of tools like prediction models and decision aids may support the implementation of personalized aftercare and surveillance in clinical practice.