ArticleBreast cancer research and treatment2023
International development of a patient-centered core outcome set for assessing health-related quality of life in metastatic breast cancer patients.
Article in Breast cancer research and treatment, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 17 papers, 1 of them a synthesis that pooled it.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
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Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
17 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Standardizing patient-reported outcomes across diseases: development of a novel generic patient-reported outcome set.Frontiers in health services · 2025Pooled it
- Embedding patient voice within European healthcare: achievements and future directions of the health outcomes observatory.Journal of patient-reported outcomes · 2026Article
- Which quality of life issues are important to patients with metastatic breast cancer: Phase 1 and 2 development of European Organisation for Research and Treatment of Cancer metastatic breast cancer module (EORTC QLQ-MBR).Breast (Edinburgh, Scotland) · 2026Article
- Article
- Exploring the lived experiences of women with metastatic breast cancer and their HRQoL questionnaire preferences: a qualitative study.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2026Article
- Improving the quality of life of people with advanced breast cancer: a global expert review and call-to-action for 2025-2035 (goal 3).Breast (Edinburgh, Scotland) · 2025Review
- A 10-step guide to standardising patient-reported outcomes data collection in healthcare: insights from the health outcomes observatory (H2O) project on overcoming implementation barriers.Journal of patient-reported outcomes · 2025Article
- Opportunities and challenges in pooling health-related quality-of-life data for prediction modeling in breast cancer across Europe: lessons from the EORTC BALANCE project.ESMO real world data and digital oncology · 2025Article
- Regional differences in experiences of patients with metastatic breast cancer in the Republic of Ireland and Northern Ireland: a comparative analysis (CTRIAL-IE 23-05).BMJ open quality · 2025Article
- ENABLE-App-Based Digital Capture and Intervention of Patient-Reported Quality of Life, Adverse Events, and Treatment Satisfaction in Breast Cancer: Protocol for a Randomized Controlled Trial.JMIR research protocols · 2025Article
- A Core Outcome Set for Inflammatory Bowel Diseases: Development and Recommendations for Implementation in Clinical Practice Through an International Multi-stakeholder Consensus Process.Journal of Crohn's & colitis · 2024Article
- Prediction of Subclinical and Clinical Multiple Organ Failure Dysfunction in Breast Cancer Patients-A Review Using AI Tools.Cancers · 2024Review
- Quality of life of patients treated for stage IV breast cancer. Multidimensional assessment and examination of determining factors.Contemporary oncology (Poznan, Poland) · 2024Article
- Getting ready for the European Health Data Space (EHDS): IDERHA's plan to align with the latest EHDS requirements for the secondary use of health data.Open research Europe · 2024Article
- From Innovator Result-driven to Multi-actor Impact-oriented Public-Private Partnerships: Integrating the Patient Perspective.Handbook of experimental pharmacology · 2024Review
- A joint international consensus statement for measuring quality of survival for patients with childhood cancer.Nature medicine · 2023Review
- Factors Influencing Quality of Life after Massive Weight Loss-What Makes the Difference?Healthcare (Basel, Switzerland) · 2023Article
Corrections and comments
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Authors and funding
20 authors.
Funding
Abstract
purposeFor patients living with metastatic breast cancer (MBC), achieving best possible health-related quality of life, along with maximizing survival, is vital. Yet, we have no systemic way to determine if we achieve these goals. A Core Outcome Set (COS) that allows standardized measurement of outcomes important to patients, but also promotes discussing these outcomes during clinical encounters, is long overdue.
methodsAn international expert group (EG) of patient advocates, researchers, medical specialists, nurse specialists, and pharmaceutical industry representatives (n = 17) reviewed a list of relevant outcomes retrieved from the literature. A broader group (n = 141: patients/patient advocates (n = 45), health care professionals/researchers (n = 64), pharmaceutical industry representatives (n = 28), and health authority representatives (n = 4)) participated in a modified Delphi procedure, scoring the relevance of outcomes in two survey rounds. The EG finalized the COS in a consensus meeting.
resultsThe final MBC COS includes 101 variables about: (1) health-related quality of life (HRQoL, n = 26) and adverse events (n = 24); (2) baseline patient characteristics (n = 9); and (3) clinical variables (n = 42). Many outcome that cover aspects of HRQoL relevant to MBC patients are included, e.g. daily functioning (including ability to work), psychosocial/emotional functioning, sexual functioning, and relationship with the medical team.
conclusionThe COS developed in this study contains important administrative data, clinical records, and clinician-reported measures that captures the impact of cancer. The COS is important for standardization of clinical research and implementation in daily practice and has received accreditation by the International Consortium for Health Outcomes Measurement (ICHOM).
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