{
  "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.",
  "abstract_shown": true,
  "affiliations": [],
  "article_type": null,
  "arxiv": null,
  "author_total": 16,
  "authors": [
    {
      "name": "Petya Zyumbileva"
    },
    {
      "name": "Tanja Spanic"
    },
    {
      "name": "Emma Gillanders"
    },
    {
      "name": "Elise Martin"
    },
    {
      "name": "Marzia Zambon"
    },
    {
      "name": "Maria Connolly"
    },
    {
      "name": "Maria Dutarte"
    },
    {
      "name": "Enrico Tricanico"
    },
    {
      "name": "Carmela Caballero"
    },
    {
      "name": "Sarra El-Abed"
    },
    {
      "name": "Janet Dunn"
    },
    {
      "name": "Isabelle Merckaert"
    },
    {
      "name": "Iain R. Macpherson"
    },
    {
      "name": "Aure Vanhecke"
    },
    {
      "name": "Ines Vaz-Luis"
    },
    {
      "name": "Maria Alice Franzoi"
    }
  ],
  "bibtex": "https://research.draconitic.com/paper/9s7fd5sbebbwk.bib",
  "cited_by": 1,
  "doi": "10.1016/j.breast.2026.104770",
  "fulltext_url": null,
  "id": "9s7fd5sbebbwk",
  "issns": [
    "0960-9776",
    "1532-3080"
  ],
  "landing_url": "https://hal.science/hal-05850374v1",
  "language": "en",
  "licence": "CC-BY-NC-ND",
  "licence_label": "CC BY-NC-ND",
  "licence_source": "journal",
  "licence_url": "https://creativecommons.org/licenses/by-nc-nd/4.0/",
  "metadata_licence": null,
  "native_subjects": [
    [
      "hal",
      "0.sdv"
    ],
    [
      "openalex",
      "3600|Patient-Provider Communication in Healthcare"
    ]
  ],
  "openalex": "W7140285287",
  "pdf_url": "https://www.thebreastonline.com/article/S0960-9776(26)00080-9/pdf",
  "pmcid": null,
  "pmid": "41955992",
  "published": "2026-11-03",
  "publisher": "Elsevier",
  "ris": "https://research.draconitic.com/paper/9s7fd5sbebbwk.ris",
  "sources": [
    {
      "first_seen": "2026-11-04T12:20:52Z",
      "native_id": "hal-05850374",
      "source": "hal",
      "url": "https://hal.science/hal-05850374v1"
    }
  ],
  "subjects": [
    {
      "field": "biology",
      "origin": "hal:0.sdv",
      "subfield": "general"
    }
  ],
  "title": "Understanding the patient journey: Barriers, facilitators, and expectations in joining a chemotherapy de-escalation trial among premenopausal patients with breast cancer",
  "title_text": "Understanding the patient journey: Barriers, facilitators, and expectations in joining a chemotherapy de-escalation trial among premenopausal patients with breast cancer",
  "type": "peer-reviewed",
  "updated_at": "2026-11-05T12:20:12Z",
  "url": "https://research.draconitic.com/paper/9s7fd5sbebbwk",
  "venue": "The Breast",
  "versions": []
}