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

doi:10.1001/jamaoncol.2016.4851

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

Wee Loon Ong, BMedSc, MBBS, MPhil, Epi^1,2; Maartje G. Schouwenburg, MD^3,4; Annelotte C.M. van Bommel, MD^3,4; et al Caleb Stowell, MD³; Kim H. Allison, MD⁵; Karen E. Benn⁶; John P. Browne, BA, PhD⁷; Rodney D. Cooter, MBBS, MD, FRACS¹; Geoff P. Delaney, MBBS, MD, PhD, FRANZCR^8,9; Francois P. Duhoux, MD, PhD¹⁰; Patricia A. Ganz, MD¹¹; Patricia Hancock¹²; Reshma Jagsi, MD, DPhil¹³; Felicia M. Knaul, MA, PhD^14,15; Anne M. Knip, RN¹⁶; Linetta B. Koppert, MD, PhD¹⁷; Henry M. Kuerer, MD, PhD¹⁸; Sarah McLaughin, MD¹⁹; Marc A. M. Mureau, MD, PhD²⁰; Ann H. Partridge, MD, MPH²¹; Dereesa Purtell Reid, MBA²²; Lisa Sheeran, RN, BN²³; Thomas J. Smith, MD, FACP²⁴; Mark J. Stoutjesdijk, MD, MSc, PhD^25,26; Marie Jeanne T.F.D. Vrancken Peeters, MD, PhD²⁷; Yvonne Wengström, PhD^28,29; Cheng-Har Yip, FRCS³⁰; Christobel Saunders, MB, BS, FRCS, FRACS³¹

Author Affiliations Article Information

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

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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.

Full Text

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

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