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

Ong WL 1 , Schouwenburg MG 2 , van Bommel ACM 2 , Stowell C 3 , Allison KH 4 , Benn KE 5 Show all authors , Browne JP 6 , Cooter RD 7 , Delaney GP 8 , Duhoux FP 9 , Ganz PA 10 , Hancock P 11 , Jagsi R 12 , Knaul FM 13 , Knip AM 14 , Koppert LB 15 , Kuerer HM 16 , McLaughin S 17 , Mureau MAM 18 , Partridge AH 19 , Reid DP 20 , Sheeran L 21 , Smith TJ 22 , Stoutjesdijk MJ 23 , Vrancken Peeters MJTFD 24 , Wengström Y 25 , Yip CH 26 , Saunders C 27

Affiliations 

  • 1 Department of Epidemiology and Preventive Medicine, Monash University, Melbourne, Australia2Department of Radiation Oncology, Peter MacCallum Cancer Centre, Melbourne Australia
  • 2 International Consortium for health outcomes Measurement, Cambridge, Massachusetts4Dutch Institute for Clinical Auditing, Leiden, the Netherlands
  • 3 International Consortium for health outcomes Measurement, Cambridge, Massachusetts
  • 4 Department of Pathology, Stanford University, Stanford, California
  • 5 EUROPA DONNA, The European Breast Cancer Coalition
  • 6 Department of Epidemiology and Public Health, University of College Cork, Cork, Ireland
  • 7 Department of Epidemiology and Preventive Medicine, Monash University, Melbourne, Australia
  • 8 Ingham Health and Medical Research Institute, South Western Sydney Local Health District, NSW, Australia9South Western Sydney Clinical School, University of New South Wales
  • 9 King Albert II Cancer Institute, Cliniques Universitaires Saint-Luc, Brussels, Belgium
  • 10 Department of Health Policy & Management, UCLA Fielding School of Public Health, California
  • 11 Breast Cancer Network Australia, VIC, Australia
  • 12 Department of Radiation Oncology, University of Michigan, Michigan
  • 13 Miami Institute for the Americas, University of Miami, Florida15Cáncer de Mama: Tómatelo a Pecho, Mexico City, Mexico
  • 14 Dutch Breast Cancer Association (BVN), Utrecht, the Netherlands
  • 15 Department of Surgical Oncology, Erasmus MC Cancer Institute, University Medical Centre, Rotterdam, the Netherlands
  • 16 Department of Breast Surgical Oncology, The University of Texas MD Anderson Cancer Center, Texas
  • 17 Department of Surgery, Mayo Clinic, Florida
  • 18 Department of Plastic and Reconstructive Surgery, Erasmus MC Cancer Institute, University Medical Centre, Rotterdam, the Netherlands
  • 19 Department of Medical Oncology, Dana-Farber Cancer Institute, Massachusetts
  • 20 Hoag Orthopedic Institute, California
  • 21 Breast Service, Peter MacCallum Cancer Centre, Melbourne, Australia
  • 22 Department of Oncology and Palliative Medicine, Johns Hopkins Medical Institutions, Maryland
  • 23 Department of Radiology, Ikazia Hospital, Rotterdam, the Netherlands26Breast Center ZuidHollandZuid, Rotterdam, the Netherlands
  • 24 Department of Surgery, the Netherlands Cancer Institute-Antoni van Leeuwenhoek Hospital, Amsterdam, the Netherlands
  • 25 Division of Nursing, Karolinska Institutet, Department NVS, Stockholm, Sweden29Department of Oncology & Pathology, Radiumhemmet, Karolinska University Hospital, Stockholm, Sweden
  • 26 Department of Surgery, Subang Jaya Medical Centre, Malaysia
  • 27 School of Surgery, University of Western Australia, WA, Australia
JAMA Oncol, 2017 May 01;3(5):677-685.
PMID: 28033439 DOI: 10.1001/jamaoncol.2016.4851

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.

* Title and MeSH Headings from MEDLINE®/PubMed®, a database of the U.S. National Library of Medicine.

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