Elsevier

JACC: Heart Failure

Volume 8, Issue 3, March 2020, Pages 212-222
JACC: Heart Failure

State-of-the-Art Review
International Consortium for Health Outcomes Measurement (ICHOM): Standardized Patient-Centered Outcomes Measurement Set for Heart Failure Patients

https://doi.org/10.1016/j.jchf.2019.09.007Get rights and content
Under a Creative Commons license
open access

Highlights

  • ICHOM seeks to help standardize and align outcome measurement efforts globally.

  • Standardization and alignment of this sort does not exist for heart failure.

  • The heart failure working group developed a standard set of 17 outcomes to be measured.

  • ICHOM hopes this standardization effort will increase quality and value in heart failure care.

Abstract

Whereas multiple national, international, and trial registries for heart failure have been created, international standards for clinical assessment and outcome measurement do not currently exist. The working group’s objective was to facilitate international comparison in heart failure care, using standardized parameters and meaningful patient-centered outcomes for research and quality of care assessments. The International Consortium for Health Outcomes Measurement recruited an international working group of clinical heart failure experts, researchers, and patient representatives to define a standard set of outcomes and risk-adjustment variables. This was designed to document, compare, and ultimately improve patient care outcomes in the heart failure population, with a focus on global feasibility and relevance. The working group employed a Delphi process, patient focus groups, online patient surveys, and multiple systematic publications searches. The process occurred over 10 months, employing 7 international teleconferences. A 17-item set has been established, addressing selected functional, psychosocial, burden of care, and survival outcome domains. These measures were designed to include all patients with heart failure, whether entered at first presentation or subsequent decompensation, excluding cardiogenic shock. Sources include clinician report, administrative data, and validated patient-reported outcome measurement tools: the Kansas City Cardiomyopathy Questionnaire; the Patient Health Questionnaire-2; and the Patient-Reported Outcomes Measurement Information System. Recommended data included those to support risk adjustment and benchmarking across providers and regions. The International Consortium for Health Outcomes Measurement developed a dataset designed to capture, compare, and improve care for heart failure, with feasibility and relevance for patients and clinicians worldwide.

Key Words

epidemiology
heart failure
quality and outcomes

Abbreviations and Acronyms

ICHOM
International Consortium for Health Outcomes Measurement
KCCQ
Kansas City Cardiomyopathy Questionnaire
MLHFQ
Minnesota Living with Heart Failure Questionnaire
PROM
patient-reported outcome measure

Cited by (0)

Funding for this project was obtained from generous support by the Aneurin Bevan University Health Board, British Heart Foundation, American Heart Association, European Society of Cardiology, and Heart Failure Association of the European Society of Cardiology. Dr. Arora is currently affiliated with Medtronic. Dr. Beltrame has received research grants from Servier Laboratories, AstraZeneca, and Biotronics. Dr. Crespo-Leiro has received advisory board honoraria, educational fees, and institutional research support from Novartis; research support from Federación Española de Asociaciones de Enfermedades Rares; travel grants from Vifor Pharma and Servier; and personal fees from Novartis, Abbott Vascular, Merck Sharpe & Dohme, and Astellas. Dr. Filippatos has received research support from Bayer, Novartis, Servier, Vifor Pharma, and Medtronic. Dr. Hardman has received an institutional research grant from The Framework Programme for Research and Technological Development–European Commission: Research and Innovation. Dr. Jessup is a member of the American College of Cardiology/American Heart Association and European Society of Cardiology Heart Failure Guidelines writing committee. Dr. Lam is supported by a Clinician Scientist Award from the National Medical Research Council of Singapore; has received research support from Boston Scientific, Bayer, Roche Diagnostics, AstraZeneca, Medtronic, and Vifor Pharma; has served as a consultant for or on the Advisory Board, Steering Committee, or Executive Committee of Boston Scientific, Bayer, Roche Diagnostics, AstraZeneca, Medtronic, Vifor Pharma, Novartis, Amgen, Merck, Janssen Research and Development LLC, Menarini, Boehringer Ingelheim, Novo Nordisk, Abbott Diagnostics, Corvia, Stealth BioTherapeutics, JanaCare, Biofourmis, Darma, Applied Therapeutics, WebMD Global LLC, and Radcliffe Group Ltd. Dr. Masoudi is the American College of Cardiology Chief Medical Officer of the National Cardiovascular Data Registry programs. Dr. McIntyre has received consulting and advisory fees and travel expenses from Bayer, Novartis Pharma, Vifor Pharma, and Servier; and research support from Bayer. Dr. Mindham is a patient representative for the National Institute for Health and Care Excellence 2010 Chronic Heart Failure Guidelines. Dr. Stevenson has received research support from St. Jude Medical and Novartis; and consulting fees from St. Jude Medical. All other authors have reported that they have no relationships relevant to the contents of this paper to disclose.

Denotes patient representative.