Understanding the patient journey: Barriers, facilitators, and expectations in joining a chemotherapy de-escalation trial among premenopausal patients with breast cancer
Abstract
BACKGROUND: De-escalation trials aim to balance clinical outcomes and quality of life (QoL), especially for premenopausal women with early breast cancer (BC), who often experience a greater treatment burden affecting their physical and psychosocial well-being. We sought to understand their patient journey-barriers, facilitators, and expectations-when joining de-escalation trials to inform patient-centered design and implementation. METHODS: OPTIMA-YOUNG, an EU-co-funded international trial, investigates a genomic assay-guided approach to de-escalate chemotherapy in premenopausal patients with early-stage hormone receptor (HR) + BC. A Co-creation Board of patients and healthcare professionals (HCPs) ensured stakeholder involvement throughout the trial. Focus groups (FGs) explored decision-making, needs, and QoL priorities related to joining a de-escalation clinical trial. Discussions were recorded, transcribed, anonymized, and analyzed using MAXQDA software. RESULTS: The three FGs included 20 participants (11 patients, 9 HCPs) from 14 countries. Three themes emerged: 1) emotional and cognitive responses to BC diagnosis/treatment; 2) environmental, HCP, and social influences on choices; 3) coping with side effects and QoL challenges. Barriers to joining a de-escalation trial included limited emotional support at diagnosis, cross-country variations in shared decision-making, poor communication on long-term side effects, fear of recurrence, and HCPs' tendency to overtreat younger patients. Developing training for patients and HCPs was seen essential for improving communication, shared decision-making skills, and enhancing symptom management and QoL. CONCLUSIONS: This pre-implementation study identified factors at the patient, HCP, and system levels that, if addressed, could improve the trial experience. Insights helped refine the OPTIMA-YOUNG protocol and implementation plan and may inform future de-escalation trials.
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BibTeX
@article{zyumbileva2026understanding,
title = {{Understanding the patient journey: Barriers, facilitators, and expectations in joining a chemotherapy de-escalation trial among premenopausal patients with breast cancer}},
author = {Petya Zyumbileva and Tanja Spanic and Emma Gillanders and Elise Martin and Marzia Zambon and Maria Connolly and Maria Dutarte and Enrico Tricanico and Carmela Caballero and Sarra El-Abed and Janet Dunn and Isabelle Merckaert and Iain R. Macpherson and Aure Vanhecke and Ines Vaz-Luis and Maria Alice Franzoi},
journal = {The Breast},
year = {2026},
month = nov,
doi = {10.1016/j.breast.2026.104770},
url = {https://hal.science/hal-05850374v1},
note = {CC BY-NC-ND},
}
RIS
TY - JOUR
TI - Understanding the patient journey: Barriers, facilitators, and expectations in joining a chemotherapy de-escalation trial among premenopausal patients with breast cancer
AU - Petya Zyumbileva
AU - Tanja Spanic
AU - Emma Gillanders
AU - Elise Martin
AU - Marzia Zambon
AU - Maria Connolly
AU - Maria Dutarte
AU - Enrico Tricanico
AU - Carmela Caballero
AU - Sarra El-Abed
AU - Janet Dunn
AU - Isabelle Merckaert
AU - Iain R. Macpherson
AU - Aure Vanhecke
AU - Ines Vaz-Luis
AU - Maria Alice Franzoi
PY - 2026
DA - 2026/11/03
JO - The Breast
DO - 10.1016/j.breast.2026.104770
UR - https://hal.science/hal-05850374v1
AB - BACKGROUND: De-escalation trials aim to balance clinical outcomes and quality of life (QoL), especially for premenopausal women with early breast cancer (BC), who often experience a greater treatment burden affecting their physical and psychosocial well-being. We sought to understand their patient journey-barriers, facilitators, and expectations-when joining de-escalation trials to inform patient-centered design and implementation. METHODS: OPTIMA-YOUNG, an EU-co-funded international trial, investigates a genomic assay-guided approach to de-escalate chemotherapy in premenopausal patients with early-stage hormone receptor (HR) + BC. A Co-creation Board of patients and healthcare professionals (HCPs) ensured stakeholder involvement throughout the trial. Focus groups (FGs) explored decision-making, needs, and QoL priorities related to joining a de-escalation clinical trial. Discussions were recorded, transcribed, anonymized, and analyzed using MAXQDA software. RESULTS: The three FGs included 20 participants (11 patients, 9 HCPs) from 14 countries. Three themes emerged: 1) emotional and cognitive responses to BC diagnosis/treatment; 2) environmental, HCP, and social influences on choices; 3) coping with side effects and QoL challenges. Barriers to joining a de-escalation trial included limited emotional support at diagnosis, cross-country variations in shared decision-making, poor communication on long-term side effects, fear of recurrence, and HCPs' tendency to overtreat younger patients. Developing training for patients and HCPs was seen essential for improving communication, shared decision-making skills, and enhancing symptom management and QoL. CONCLUSIONS: This pre-implementation study identified factors at the patient, HCP, and system levels that, if addressed, could improve the trial experience. Insights helped refine the OPTIMA-YOUNG protocol and implementation plan and may inform future de-escalation trials.
SN - 0960-9776
SN - 1532-3080
ER -