“Let’s talk about risk”: co-designing a pathway to assess, communicate and act on individual risk of long-term toxicities after breast cancer

Purpose: Survivors of breast cancer (BC) may endure significant and persistent post-treatment burdens that negatively impact overall quality of life. We previously developed risk prediction algorithms to identify individual patient profiles at increased risk for long-term toxicities. To prepare for the implementation of these risk algorithms in routine care, we performed a study to assess preferences, catalysts, and barriers concerning communication of individual risk of long-term BC toxicities. The goal was to co-design a pathway for risk assessment, communication, and management starting at diagnosis. Methods: A co-design study was performed using a participatory research framework and qualitative methods. Two phases of focus groups (FG) were conducted to assess the perspective of patients and providers through an iterative process of Exploration, Consultation, Prioritization, Integration and Co-design. Discussions were guided by four main questions: Who should communicate the risk? When should the risk be communicated? How should the risk be communicated? What information should be communicated, and care proposed?. FG discussions were recorded, pseudo-anonymized, transcribed and evaluated through a thematic content analysis. Results were reported following the consolidated criteria for reporting qualitative research (COREQ). Results: Six FG were conducted between July 2022 and August 2023, with a total of 28 participants (8 patients and 20 providers). Results revealed a strong willingness to discuss the risk of long-term toxicities, particularly for patients who would present with a higher risk of toxicities. However, this willingness was contingent on the implementation of supportive care pathways that offer personalized communication strategies and risk mitigation approaches tailored to each patient’s need. Conclusions: This study found that both patients and providers are interested in, and willing to engage in, the assessment, communication and mitigation of long-term toxicities from the time of diagnosis. To address this need in routine care, a tailored pathway was co-designed and will undergo formal testing in a hybrid Type 3 effectiveness/implementation clinical trial (NCT06479057). Implications for cancer survivors: This study assessed the needs, preferences and expectations of patients and providers for implementing a care pathway to assess, communicate and mitigate the risk of long-term toxicities after breast cancer treatment using risk prediction algorithms.