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.
ContributorsWee Loon Ong, BMedSc, MBBS, MPhil, Epi1,2; Maartje G. Schouwenburg, MD3,4; Annelotte C.M. van Bommel, MD3,4; 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, FRANZCR8,9; Francois P. Duhoux, MD, PhD10; Patricia A. Ganz, MD11; Patricia Hancock12; Reshma Jagsi, MD, DPhil13; Felicia M. Knaul, MA, PhD14,15; 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, PhD25,26; Marie Jeanne T.F.D. Vrancken Peeters, MD, PhD27; Yvonne Wengström, PhD28,29; Cheng-Har Yip, FRCS30; Christobel Saunders, MB, BS, FRCS, FRACS31
Disease Category: Cancer
Disease Name: Breast cancer
Age Range: 18 - 120
Sex: Either
Nature of Intervention: Any
- Clinical experts
- Epidemiologists
- Patient/ support group representatives
- COS for practice
- COS for clinical trials or clinical research
- Delphi process
- Focus group(s)
- Survey
- Systematic review
- Teleconferences