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Special Communication
May 2017

A Standard Set of Value-Based Patient-Centered Outcomes for Breast Cancer: The International Consortium for Health Outcomes Measurement (ICHOM) Initiative

Author Affiliations
  • 1Department of Epidemiology and Preventive Medicine, Monash University, Melbourne, Australia
  • 2Department of Radiation Oncology, Peter MacCallum Cancer Centre, Melbourne Australia
  • 3International Consortium for health outcomes Measurement, Cambridge, Massachusetts
  • 4Dutch Institute for Clinical Auditing, Leiden, the Netherlands
  • 5Department of Pathology, Stanford University, Stanford, California
  • 6EUROPA DONNA, The European Breast Cancer Coalition
  • 7Department of Epidemiology and Public Health, University of College Cork, Cork, Ireland
  • 8Ingham Health and Medical Research Institute, South Western Sydney Local Health District, NSW, Australia
  • 9South Western Sydney Clinical School, University of New South Wales
  • 10King Albert II Cancer Institute, Cliniques Universitaires Saint-Luc, Brussels, Belgium
  • 11Department of Health Policy & Management, UCLA Fielding School of Public Health, California
  • 12Breast Cancer Network Australia, VIC, Australia
  • 13Department of Radiation Oncology, University of Michigan, Michigan
  • 14Miami Institute for the Americas, University of Miami, Florida
  • 15Cáncer de Mama: Tómatelo a Pecho, Mexico City, Mexico
  • 16Dutch Breast Cancer Association (BVN), Utrecht, the Netherlands
  • 17Department of Surgical Oncology, Erasmus MC Cancer Institute, University Medical Centre, Rotterdam, the Netherlands
  • 18Department of Breast Surgical Oncology, The University of Texas MD Anderson Cancer Center, Texas
  • 19Department of Surgery, Mayo Clinic, Florida
  • 20Department of Plastic and Reconstructive Surgery, Erasmus MC Cancer Institute, University Medical Centre, Rotterdam, the Netherlands
  • 21Department of Medical Oncology, Dana-Farber Cancer Institute, Massachusetts
  • 22Hoag Orthopedic Institute, California
  • 23Breast Service, Peter MacCallum Cancer Centre, Melbourne, Australia
  • 24Department of Oncology and Palliative Medicine, Johns Hopkins Medical Institutions, Maryland
  • 25Department of Radiology, Ikazia Hospital, Rotterdam, the Netherlands
  • 26Breast Center ZuidHollandZuid, Rotterdam, the Netherlands
  • 27Department of Surgery, the Netherlands Cancer Institute–Antoni van Leeuwenhoek Hospital, Amsterdam, the Netherlands
  • 28Division of Nursing, Karolinska Institutet, Department NVS, Stockholm, Sweden
  • 29Department of Oncology & Pathology, Radiumhemmet, Karolinska University Hospital, Stockholm, Sweden
  • 30Department of Surgery, Subang Jaya Medical Centre, Malaysia
  • 31School of Surgery, University of Western Australia, WA, Australia
JAMA Oncol. 2017;3(5):677-685. doi:10.1001/jamaoncol.2016.4851

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.

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