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A standard set of value-based patient-centered outcomes for breast cancer: The International Consortium for Health Outcomes Measurement (ICHOM) initiative

  • Wee Loon Ong
  • , Maartje G. Schouwenburg
  • , Annelotte C.M. Van Bommel
  • , Caleb Stowell
  • , Kim H. Allison
  • , Karen E. Benn
  • , John P. Browne
  • , Rodney D. Cooter
  • , Geoff P. Delaney
  • , Francois P. Duhoux
  • , Patricia A. Ganz
  • , Patricia Hancock
  • , Reshma Jagsi
  • , Felicia M. Knaul
  • , Anne M. Knip
  • , Linetta B. Koppert
  • , Henry M. Kuerer
  • , Sarah McLaughin
  • , Marc A.M. Mureau
  • , Ann H. Partridge
  • Dereesa Purtell Reid, Lisa Sheeran, Thomas J. Smith, Mark J. Stoutjesdijk, Marie Jeanne T.F.D. Vrancken Peeters, Yvonne Wengström, Cheng Har Yip, Christobel Saunders
  • Monash University
  • Peter Maccallum Cancer Centre
  • International Consortium for Health Outcomes Measurement
  • Dutch Institute for Clinical Auditing
  • Stanford University
  • Europa Donna
  • South Western Sydney Local Health District
  • University of New South Wales
  • Université catholique de Louvain
  • University of California at Los Angeles
  • University of Michigan, Ann Arbor
  • University of Miami
  • Cáncer de Mama: Tómatelo a Pecho
  • Dutch Breast Cancer Association
  • Erasmus University Rotterdam
  • University of Texas MD Anderson Cancer Center
  • Mayo Clinic Rochester, MN
  • Dana-Farber Cancer Institute
  • Hoag Orthopedic Institute
  • Johns Hopkins University
  • Ikazia Hospital
  • Breast Center ZuidHollandZuid
  • Antoni van Leeuwenhoek Hospital
  • Karolinska Institutet
  • Sime Darby Berhad
  • University of Western Australia

Research output: Contribution to journalArticlepeer-review

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.

Original languageEnglish
Pages (from-to)677-685
Number of pages9
JournalJAMA Oncology
Volume3
Issue number5
DOIs
Publication statusPublished - 1 May 2017

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

  1. SDG 3 - Good Health and Well-being
    SDG 3 Good Health and Well-being

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