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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.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Methods<\/jats:title>\n                <jats:p>An international expert group (EG) of patient advocates, researchers, medical specialists, nurse specialists, and pharmaceutical industry representatives (<jats:italic>n<\/jats:italic>\u2009=\u200917) reviewed a list of relevant outcomes retrieved from the literature. A broader group (<jats:italic>n<\/jats:italic>\u2009=\u2009141: patients\/patient advocates (<jats:italic>n<\/jats:italic>\u2009=\u200945), health care professionals\/researchers (<jats:italic>n<\/jats:italic>\u2009=\u200964), pharmaceutical industry representatives (<jats:italic>n<\/jats:italic>\u2009=\u200928), and health authority representatives (<jats:italic>n<\/jats:italic>\u2009=\u20094)) participated in a modified Delphi procedure, scoring the relevance of outcomes in two survey rounds. The EG finalized the COS in a consensus meeting.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Results<\/jats:title>\n                <jats:p>The final MBC COS includes 101 variables about: (1) health-related quality of life (HRQoL, <jats:italic>n<\/jats:italic>\u2009=\u200926) and adverse events (<jats:italic>n<\/jats:italic>\u2009=\u200924); (2) baseline patient characteristics (<jats:italic>n<\/jats:italic>\u2009=\u20099); and (3) clinical variables (<jats:italic>n<\/jats:italic>\u2009=\u200942). 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.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Conclusion<\/jats:title>\n                <jats:p>The 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).<\/jats:p>\n              <\/jats:sec>","DOI":"10.1007\/s10549-022-06827-6","type":"journal-article","created":{"date-parts":[[2023,1,20]],"date-time":"2023-01-20T23:46:36Z","timestamp":1674258396000},"page":"265-281","update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":27,"title":["International development of a patient-centered core outcome set for assessing health-related quality of life in metastatic breast cancer patients"],"prefix":"10.1007","volume":"198","author":[{"given":"K. M.","family":"de Ligt","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"B. 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F Cardoso: Consultancy role for: Amgen, Astellas\/Medivation, AstraZeneca, Celgene, Daiichi-Sankyo, Eisai, GE Oncology, Genentech, Gilead, GlaxoSmithKline, Iqvia, Macrogenics, Medscape, Merck-Sharp, Merus BV, Mylan, Mundipharma, Novartis, Pfizer, Pierre-Fabre, prIME Oncology, Roche, Sanofi, Samsung Bioepis, Seagen, Teva, Touchime (all outside the submitted work). T Stamm: grants and personal fees from AbbVie, Roche, Sanofi, Takeda, and Novartis (all outside the submitted work). M Karsten: received speaker honorary from Roche and Astra Zeneca, no relationships or activities potentially influencing the submitted work. L Travado: member of the ECIBC expert group (European Commission Initiative on Breast Cancer), and member of the ABC Global Alliance. N Carney: is an employee and shareholder of F.Hoffmann-La Roche Ltd. BH de Rooij, E Hedayati, VR Smaardijk, N Carney, Y Seidler, TA Stamm, LB Koppert, LV van de Poll-Franse, are members of the H2O Health Outcomes Observatory (H2O). The other authors (KL, AI, CS, YS, YW, EH) declare they have no conflict of interest to report.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Conflict of interest"}},{"value":"All participants gave electronic informed consent for participating in the Delphi.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent to participate"}},{"value":"The Netherlands Cancer Institute Institutional Review Board (IRB) declared that formal approval from an ethics committee was not required. Local execution was approved under registration number IRBd21-148.","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethical approval"}}]}}