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

Zerillo JA 1 , Schouwenburg MG 2 , van Bommel ACM 2 , Stowell C 3 , Lippa J 3 , Bauer D 4 Show all authors , Berger AM 5 , Boland G 6 , Borras JM 7 , Buss MK 8 , Cima R 9 , Van Cutsem E 10 , van Duyn EB 11 , Finlayson SRG 12 , Hung-Chun Cheng S 13 , Langelotz C 14 , Lloyd J 15 , Lynch AC 16 , Mamon HJ 17 , McAllister PK 18 , Minsky BD 19 , Ngeow J 20 , Abu Hassan MR 21 , Ryan K 22 , Shankaran V 23 , Upton MP 24 , Zalcberg J 25 , van de Velde CJ 26 , Tollenaar R 26 , Colorectal Cancer Working Group of the International Consortium for Health Outcomes Measurement (ICHOM)

Affiliations 

  • 1 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
  • 2 International Consortium for Health Outcomes Measurement (ICHOM), Cambridge, Massachusetts4Department of Surgery, Leiden University Medical Center, Leiden, the Netherlands
  • 3 International Consortium for Health Outcomes Measurement (ICHOM), Cambridge, Massachusetts
  • 4 Bowel Cancer Australia, North Sydney, Australia
  • 5 College of Nursing, University of Nebraska Medical Center, Omaha
  • 6 Department of Radiology, Massachusetts General Hospital, Harvard Medical School, Boston
  • 7 Department of Clinical Sciences, Institut d'Investigació Biomèdica de Bellvitge, University of Barcelona, Barcelona, Spain
  • 8 Division of Hematology and Oncology, Department of Medicine, Beth Israel Deaconess Medical Center, Boston, Massachusetts
  • 9 Department of Colon and Rectal Surgery, Mayo Clinic, Rochester, Minnesota
  • 10 Department of Digestive Oncology, University Hospitals Leuven and Katholieke Universiteit Leuven, Leuven, Belgium
  • 11 Department of Surgery, Medisch Spectrum Twente, Enschede, the Netherlands
  • 12 Department of Surgery, University of Utah School of Medicine, Salt Lake City
  • 13 Department of Radiation Oncology, Koo Foundation Sun Yan-Sen Cancer Center, Taiwan
  • 14 Department of Surgery, Campus Charité Mitte/Campus Virchow, Universitätsmedizin Berlin, Berlin, Germany
  • 15 Colon Cancer Alliance, Washington, DC
  • 16 Department of Surgery, Peter MacCallum Cancer Center, East Melbourne, Australia
  • 17 Department of Radiation Oncology, Dana-Farber Cancer Institute, Boston, Massachusetts
  • 18 Fight Colorectal Cancer, Alexandria, Virginia
  • 19 Division of Radiation Oncology, The University of Texas MD Anderson Cancer Center, Houston
  • 20 Division of Medical Oncology, National Cancer Centre, Singapore
  • 21 Department of Gastroenterology, Hospital Sultanah Bahiyah, Kedah, Malaysia
  • 22 Cancer Support Community, Washington, DC
  • 23 Division of Medical Oncology, Department of Medicine, University of Washington, Seattle
  • 24 Department of Pathology, University of Washington, Seattle
  • 25 School of Public Health and Preventive Medicine, Monash University, Melbourne, Australia
  • 26 Department of Surgery, Leiden University Medical Center, Leiden, the Netherlands
JAMA Oncol, 2017 May 01;3(5):686-694.
PMID: 28384684 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.

* Title and MeSH Headings from MEDLINE®/PubMed®, a database of the U.S. National Library of Medicine.

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