title: A Standard Set of Value-Based Patient-Centered Outcomes for Breast Cancer: The International Consortium for Health Outcomes Measurement (ICHOM) Initiative.
abstract: A major challenge in value-based health care is the lack of standardized health outcomes measurements, hindering optimal monitoring and comparison of the quality of health care across different settings globally. The International Consortium for Health Outcomes Measurement (ICHOM) assembled a multidisciplinary international working group, comprised of 26 health care providers and patient advocates, to develop a standard set of value-based patient-centered outcomes for breast cancer (BC). The working group convened via 8 teleconferences and completed a follow-up survey after each meeting. A modified 2-round Delphi method was used to achieve consensus on the outcomes and case-mix variables to be included. Patient focus group meetings (8 early or metastatic BC patients) and online anonymized surveys of 1225 multinational BC patients and survivors were also conducted to obtain patients' input. The standard set encompasses survival and cancer control, and disutility of care (eg, acute treatment complications) outcomes, to be collected through administrative data and/or clinical records. A combination of multiple patient-reported outcomes measurement (PROM) tools is recommended to capture long-term degree of health outcomes. Selected case-mix factors were recommended to be collected at baseline. The ICHOM will endeavor to achieve wide buy-in of this set and facilitate its implementation in routine clinical practice in various settings and institutions worldwide.
authors.affiliation: Department of Epidemiology and Preventive Medicine, Monash University, Melbourne, Australia2Department of Radiation Oncology, Peter MacCallum Cancer Centre, Melbourne Australia.
authors.forename: Wee Loon
authors.initials: WL
authors.lastname: Ong
authors.affiliation: International Consortium for health outcomes Measurement, Cambridge, Massachusetts4Dutch Institute for Clinical Auditing, Leiden, the Netherlands.
authors.forename: Maartje G
authors.initials: MG
authors.lastname: Schouwenburg
authors.affiliation: International Consortium for health outcomes Measurement, Cambridge, Massachusetts4Dutch Institute for Clinical Auditing, Leiden, the Netherlands.
authors.forename: Annelotte C M
authors.initials: ACM
authors.lastname: van Bommel
authors.affiliation: International Consortium for health outcomes Measurement, Cambridge, Massachusetts.
authors.forename: Caleb
authors.initials: C
authors.lastname: Stowell
authors.affiliation: Department of Pathology, Stanford University, Stanford, California.
authors.forename: Kim H
authors.initials: KH
authors.lastname: Allison
authors.affiliation: EUROPA DONNA, The European Breast Cancer Coalition.
authors.forename: Karen E
authors.initials: KE
authors.lastname: Benn
authors.affiliation: Department of Epidemiology and Public Health, University of College Cork, Cork, Ireland.
authors.forename: John P
authors.initials: JP
authors.lastname: Browne
authors.affiliation: Department of Epidemiology and Preventive Medicine, Monash University, Melbourne, Australia.
authors.forename: Rodney D
authors.initials: RD
authors.lastname: Cooter
authors.affiliation: Ingham Health and Medical Research Institute, South Western Sydney Local Health District, NSW, Australia9South Western Sydney Clinical School, University of New South Wales.
authors.forename: Geoff P
authors.initials: GP
authors.lastname: Delaney
authors.affiliation: King Albert II Cancer Institute, Cliniques Universitaires Saint-Luc, Brussels, Belgium.
authors.forename: Francois P
authors.initials: FP
authors.lastname: Duhoux
authors.affiliation: Department of Health Policy & Management, UCLA Fielding School of Public Health, California.
authors.forename: Patricia A
authors.initials: PA
authors.lastname: Ganz
authors.affiliation: Breast Cancer Network Australia, VIC, Australia.
authors.forename: Patricia
authors.initials: P
authors.lastname: Hancock
authors.affiliation: Department of Radiation Oncology, University of Michigan, Michigan.
authors.forename: Reshma
authors.initials: R
authors.lastname: Jagsi
authors.affiliation: Miami Institute for the Americas, University of Miami, Florida15Cáncer de Mama: Tómatelo a Pecho, Mexico City, Mexico.
authors.forename: Felicia M
authors.initials: FM
authors.lastname: Knaul
authors.affiliation: Dutch Breast Cancer Association (BVN), Utrecht, the Netherlands.
authors.forename: Anne M
authors.initials: AM
authors.lastname: Knip
authors.affiliation: Department of Surgical Oncology, Erasmus MC Cancer Institute, University Medical Centre, Rotterdam, the Netherlands.
authors.forename: Linetta B
authors.initials: LB
authors.lastname: Koppert
authors.affiliation: Department of Breast Surgical Oncology, The University of Texas MD Anderson Cancer Center, Texas.
authors.forename: Henry M
authors.initials: HM
authors.lastname: Kuerer
authors.affiliation: Department of Surgery, Mayo Clinic, Florida.
authors.forename: Sarah
authors.initials: S
authors.lastname: McLaughin
authors.affiliation: Department of Plastic and Reconstructive Surgery, Erasmus MC Cancer Institute, University Medical Centre, Rotterdam, the Netherlands.
authors.forename: Marc A M
authors.initials: MAM
authors.lastname: Mureau
authors.affiliation: Department of Medical Oncology, Dana-Farber Cancer Institute, Massachusetts.
authors.forename: Ann H
authors.initials: AH
authors.lastname: Partridge
authors.affiliation: Hoag Orthopedic Institute, California.
authors.forename: Dereesa Purtell
authors.initials: DP
authors.lastname: Reid
authors.affiliation: Breast Service, Peter MacCallum Cancer Centre, Melbourne, Australia.
authors.forename: Lisa
authors.initials: L
authors.lastname: Sheeran
authors.affiliation: Department of Oncology and Palliative Medicine, Johns Hopkins Medical Institutions, Maryland.
authors.forename: Thomas J
authors.initials: TJ
authors.lastname: Smith
authors.affiliation: Department of Radiology, Ikazia Hospital, Rotterdam, the Netherlands26Breast Center ZuidHollandZuid, Rotterdam, the Netherlands.
authors.forename: Mark J
authors.initials: MJ
authors.lastname: Stoutjesdijk
authors.affiliation: Department of Surgery, the Netherlands Cancer Institute-Antoni van Leeuwenhoek Hospital, Amsterdam, the Netherlands.
authors.forename: Marie Jeanne T F D
authors.initials: MJTFD
authors.lastname: Vrancken Peeters
authors.affiliation: Division of Nursing, Karolinska Institutet, Department NVS, Stockholm, Sweden29Department of Oncology & Pathology, Radiumhemmet, Karolinska University Hospital, Stockholm, Sweden.
authors.forename: Yvonne
authors.initials: Y
authors.lastname: Wengström
authors.affiliation: Department of Surgery, Subang Jaya Medical Centre, Malaysia.
authors.forename: Cheng-Har
authors.initials: CH
authors.lastname: Yip
authors.affiliation: School of Surgery, University of Western Australia, WA, Australia.
authors.forename: Christobel
authors.initials: C
authors.lastname: Saunders
mesh_terms: D001943:Breast Neoplasms / Q000628:therapy*; D003697:Delphi Technique; D005260:Female; D017144:Focus Groups; D006801:Humans; D007391:International Cooperation; D000071066:Patient Reported Outcome Measures; D011787:Quality of Health Care; D011788:Quality of Life