A Standard Set of Value-Based Patient-Centered Outcomes for Breast Cancer

Wee Loon Ong(Monash University), Maartje G. Schouwenburg(Dutch Institute for Clinical Auditing), A.C.M. van Bommel(Dutch Institute for Clinical Auditing), Caleb Stowell, Kim H. Allison(Stanford University), Karen Benn(Europa Donna), John Browne(University College Cork), Rodney D. Cooter(Monash University), Geoff P. Delaney(UNSW Sydney), François P. Duhoux(Cliniques Universitaires Saint-Luc), Patricia A. Ganz(UCLA Health), Patricia Hancock(Breast Cancer Network Australia), Reshma Jagsi(University of Michigan–Ann Arbor), Felícia Marie Knaul, Anne M. Knip(Borstkankervereniging Nederland), Linetta B. Koppert(Erasmus MC Cancer Institute), Henry M. Kuerer(The University of Texas MD Anderson Cancer Center), Sarah McLaughin(Mayo Clinic in Florida), Marc A.M. Mureau(Erasmus MC Cancer Institute), Ann H. Partridge(Dana-Farber Cancer Institute), Dereesa Purtell Reid(Hoag Orthopedic Institute), Lisa Sheeran(Peter MacCallum Cancer Centre), Thomas J. Smith(Johns Hopkins University), Mark J. Stoutjesdijk(Ikazia Ziekenhuis), Marie Jeanne T. F. D. Vrancken Peeters(The Netherlands Cancer Institute), Yvonne Wengström(Karolinska Institutet), Cheng Har Yip(Subang Jaya Medical Centre), Christobel Saunders(University of Western Australia)
JAMA Oncology
December 29, 2016
Cited by 240

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.


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