title: An International Collaborative Standardizing a Comprehensive Patient-Centered Outcomes Measurement Set for Colorectal Cancer.
abstract: OBJECTIVE
  Global health systems are shifting toward value-based care in an effort to drive better outcomes in the setting of rising health care costs. This shift requires a common definition of value, starting with the outcomes that matter most to patients.
  
  
  OBJECTIVE
  The International Consortium for Health Outcomes Measurement (ICHOM), a nonprofit initiative, was formed to define standard sets of outcomes by medical condition. In this article, we report the efforts of ICHOM's working group in colorectal cancer.
  
  
  METHODS
  The working group was composed of multidisciplinary oncology specialists in medicine, surgery, radiation therapy, palliative care, nursing, and pathology, along with patient representatives. Through a modified Delphi process during 8 months (July 8, 2015 to February 29, 2016), ICHOM led the working group to a consensus on a final recommended standard set. The process was supported by a systematic PubMed literature review (1042 randomized clinical trials and guidelines from June 3, 2005, to June 3, 2015), a patient focus group (11 patients with early and metastatic colorectal cancer convened during a teleconference in August 2015), and a patient validation survey (among 276 patients with and survivors of colorectal cancer between October 15, 2015, and November 4, 2015).
  
  
  RESULTS
  After consolidating findings of the literature review and focus group meeting, a list of 40 outcomes was presented to the WG and underwent voting. The final recommendation includes outcomes in the following categories: survival and disease control, disutility of care, degree of health, and quality of death. Selected case-mix factors were recommended to be collected at baseline to facilitate comparison of results across treatments and health care professionals.
  
  
  CONCLUSIONS
  A standardized set of patient-centered outcome measures to inform value-based health care in colorectal cancer was developed. Pilot efforts are under way to measure the standard set among members of the working group.
authors.affiliation: International Consortium for Health Outcomes Measurement (ICHOM), Cambridge, Massachusetts2Department of Quality and Patient Safety, Dana-Farber Cancer Institute, Boston, Massachusetts3Division of Hematology and Oncology, Department of Medicine, Beth Israel Deaconess Medical Center, Boston, Massachusetts.
authors.forename: Jessica A
authors.initials: JA
authors.lastname: Zerillo
authors.affiliation: International Consortium for Health Outcomes Measurement (ICHOM), Cambridge, Massachusetts4Department of Surgery, Leiden University Medical Center, Leiden, the Netherlands.
authors.forename: Maartje G
authors.initials: MG
authors.lastname: Schouwenburg
authors.affiliation: International Consortium for Health Outcomes Measurement (ICHOM), Cambridge, Massachusetts4Department of Surgery, Leiden University Medical Center, Leiden, the Netherlands.
authors.forename: Annelotte C M
authors.initials: ACM
authors.lastname: van Bommel
authors.affiliation: International Consortium for Health Outcomes Measurement (ICHOM), Cambridge, Massachusetts.
authors.forename: Caleb
authors.initials: C
authors.lastname: Stowell
authors.affiliation: International Consortium for Health Outcomes Measurement (ICHOM), Cambridge, Massachusetts.
authors.forename: Jacob
authors.initials: J
authors.lastname: Lippa
authors.affiliation: Bowel Cancer Australia, North Sydney, Australia.
authors.forename: Donna
authors.initials: D
authors.lastname: Bauer
authors.affiliation: College of Nursing, University of Nebraska Medical Center, Omaha.
authors.forename: Ann M
authors.initials: AM
authors.lastname: Berger
authors.affiliation: Department of Radiology, Massachusetts General Hospital, Harvard Medical School, Boston.
authors.forename: Gilles
authors.initials: G
authors.lastname: Boland
authors.affiliation: Department of Clinical Sciences, Institut d'Investigació Biomèdica de Bellvitge, University of Barcelona, Barcelona, Spain.
authors.forename: Josep M
authors.initials: JM
authors.lastname: Borras
authors.affiliation: Division of Hematology and Oncology, Department of Medicine, Beth Israel Deaconess Medical Center, Boston, Massachusetts.
authors.forename: Mary K
authors.initials: MK
authors.lastname: Buss
authors.affiliation: Department of Colon and Rectal Surgery, Mayo Clinic, Rochester, Minnesota.
authors.forename: Robert
authors.initials: R
authors.lastname: Cima
authors.affiliation: Department of Digestive Oncology, University Hospitals Leuven and Katholieke Universiteit Leuven, Leuven, Belgium.
authors.forename: Eric
authors.initials: E
authors.lastname: Van Cutsem
authors.affiliation: Department of Surgery, Medisch Spectrum Twente, Enschede, the Netherlands.
authors.forename: Eino B
authors.initials: EB
authors.lastname: van Duyn
authors.affiliation: Department of Surgery, University of Utah School of Medicine, Salt Lake City.
authors.forename: Samuel R G
authors.initials: SRG
authors.lastname: Finlayson
authors.affiliation: Department of Radiation Oncology, Koo Foundation Sun Yan-Sen Cancer Center, Taiwan.
authors.forename: Skye
authors.initials: S
authors.lastname: Hung-Chun Cheng
authors.affiliation: Department of Surgery, Campus Charité Mitte/Campus Virchow, Universitätsmedizin Berlin, Berlin, Germany.
authors.forename: Corinna
authors.initials: C
authors.lastname: Langelotz
authors.affiliation: Colon Cancer Alliance, Washington, DC.
authors.forename: John
authors.initials: J
authors.lastname: Lloyd
authors.affiliation: Department of Surgery, Peter MacCallum Cancer Center, East Melbourne, Australia.
authors.forename: Andrew C
authors.initials: AC
authors.lastname: Lynch
authors.affiliation: Department of Radiation Oncology, Dana-Farber Cancer Institute, Boston, Massachusetts.
authors.forename: Harvey J
authors.initials: HJ
authors.lastname: Mamon
authors.affiliation: Fight Colorectal Cancer, Alexandria, Virginia.
authors.forename: Pamela K
authors.initials: PK
authors.lastname: McAllister
authors.affiliation: Division of Radiation Oncology, The University of Texas MD Anderson Cancer Center, Houston.
authors.forename: Bruce D
authors.initials: BD
authors.lastname: Minsky
authors.affiliation: Division of Medical Oncology, National Cancer Centre, Singapore.
authors.forename: Joanne
authors.initials: J
authors.lastname: Ngeow
authors.affiliation: Department of Gastroenterology, Hospital Sultanah Bahiyah, Kedah, Malaysia.
authors.forename: Muhammad R
authors.initials: MR
authors.lastname: Abu Hassan
authors.affiliation: Cancer Support Community, Washington, DC.
authors.forename: Kim
authors.initials: K
authors.lastname: Ryan
authors.affiliation: Division of Medical Oncology, Department of Medicine, University of Washington, Seattle.
authors.forename: Veena
authors.initials: V
authors.lastname: Shankaran
authors.affiliation: Department of Pathology, University of Washington, Seattle.
authors.forename: Melissa P
authors.initials: MP
authors.lastname: Upton
authors.affiliation: School of Public Health and Preventive Medicine, Monash University, Melbourne, Australia.
authors.forename: John
authors.initials: J
authors.lastname: Zalcberg
authors.affiliation: Department of Surgery, Leiden University Medical Center, Leiden, the Netherlands.
authors.forename: Cornelis J
authors.initials: CJ
authors.lastname: van de Velde
authors.affiliation: Department of Surgery, Leiden University Medical Center, Leiden, the Netherlands.
authors.forename: Rob
authors.initials: R
authors.lastname: Tollenaar
mesh_terms: D015179:Colorectal Neoplasms / Q000628:therapy*; D003697:Delphi Technique; D017144:Focus Groups; D006801:Humans; D007391:International Cooperation; D000071066:Patient Reported Outcome Measures; D011787:Quality of Health Care; D011788:Quality of Life