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Special Communication
May 2017

An International Collaborative Standardizing a Comprehensive Patient-Centered Outcomes Measurement Set for Colorectal Cancer

Author Affiliations
  • 1International Consortium for Health Outcomes Measurement (ICHOM), Cambridge, Massachusetts
  • 2Department of Quality and Patient Safety, Dana-Farber Cancer Institute, Boston, Massachusetts
  • 3Division of Hematology and Oncology, Department of Medicine, Beth Israel Deaconess Medical Center, Boston, Massachusetts
  • 4Department of Surgery, Leiden University Medical Center, Leiden, the Netherlands
  • 5Bowel Cancer Australia, North Sydney, Australia
  • 6College of Nursing, University of Nebraska Medical Center, Omaha
  • 7Department of Radiology, Massachusetts General Hospital, Harvard Medical School, Boston
  • 8Department of Clinical Sciences, Institut d’Investigació Biomèdica de Bellvitge, University of Barcelona, Barcelona, Spain
  • 9Department of Colon and Rectal Surgery, Mayo Clinic, Rochester, Minnesota
  • 10Department of Digestive Oncology, University Hospitals Leuven and Katholieke Universiteit Leuven, Leuven, Belgium
  • 11Department of Surgery, Medisch Spectrum Twente, Enschede, the Netherlands
  • 12Department of Surgery, University of Utah School of Medicine, Salt Lake City
  • 13Department of Radiation Oncology, Koo Foundation Sun Yan-Sen Cancer Center, Taiwan
  • 14Department of Surgery, Campus Charité Mitte/Campus Virchow, Universitätsmedizin Berlin, Berlin, Germany
  • 15Colon Cancer Alliance, Washington, DC
  • 16Department of Surgery, Peter MacCallum Cancer Center, East Melbourne, Australia
  • 17Department of Radiation Oncology, Dana-Farber Cancer Institute, Boston, Massachusetts
  • 18Fight Colorectal Cancer, Alexandria, Virginia
  • 19Division of Radiation Oncology, The University of Texas MD Anderson Cancer Center, Houston
  • 20Division of Medical Oncology, National Cancer Centre, Singapore
  • 21Department of Gastroenterology, Hospital Sultanah Bahiyah, Kedah, Malaysia
  • 22Cancer Support Community, Washington, DC
  • 23Division of Medical Oncology, Department of Medicine, University of Washington, Seattle
  • 24Department of Pathology, University of Washington, Seattle
  • 25School of Public Health and Preventive Medicine, Monash University, Melbourne, Australia
JAMA Oncol. 2017;3(5):686-694. doi:10.1001/jamaoncol.2017.0417
Abstract

Importance  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.

Evidence Review  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).

Findings  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.

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