Franzoi Maria Alice, Santolaya Carlota, Martin Elise, Fasse Leonor, Rouby Pascal, Minot-This Marie Sophie, Di Meglio Antonio, Vaz-Luis Ines
Cancer Survivorship Group, Molecular Predictors and New Targets in Oncology, INSERM Unit 981, Gustave Roussy, Villejuif, France.
Department for the Organization of Patient Pathways (DIOPP), Gustave Roussy, Villejuif, France.
J Cancer Surviv. 2025 Jun 12. doi: 10.1007/s11764-025-01826-0.
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.
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).
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.
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).
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.
乳腺癌（BC）幸存者可能会承受重大且持续的治疗后负担，这会对整体生活质量产生负面影响。我们之前开发了风险预测算法，以识别长期毒性风险增加的个体患者特征。为了准备在常规护理中实施这些风险算法，我们开展了一项研究，以评估关于BC长期毒性个体风险沟通的偏好、促成因素和障碍。目标是共同设计一条从诊断开始的风险评估、沟通和管理途径。
使用参与式研究框架和定性方法进行了一项共同设计研究。通过探索、咨询、优先级排序、整合和共同设计的迭代过程，开展了两个阶段的焦点小组（FG），以评估患者和提供者的观点。讨论由四个主要问题引导：谁应该传达风险？何时传达风险？如何传达风险？应该传达哪些信息并提出何种护理建议？FG讨论进行了录音、伪匿名处理、转录，并通过主题内容分析进行评估。根据定性研究报告的统一标准（COREQ）报告结果。
在2022年7月至20日23年8月期间进行了6次FG，共有28名参与者（8名患者和20名提供者）。结果显示，人们强烈愿意讨论长期毒性风险，尤其是对于毒性风险较高的患者。然而，这种意愿取决于是否实施支持性护理途径，该途径提供个性化的沟通策略和根据每个患者需求定制的风险缓解方法。
本研究发现，患者和提供者都对从诊断时起评估、沟通和减轻长期毒性感兴趣并愿意参与。为了在常规护理中满足这一需求，共同设计了一条定制途径，并将在一项混合型3期有效性/实施临床试验（NCT06479057）中进行正式测试。
本研究评估了患者和提供者对于实施护理途径以使用风险预测算法评估、沟通和减轻乳腺癌治疗后长期毒性风险的需求、偏好和期望。
