Author + information
- Received January 10, 2019
- Revision received September 16, 2019
- Accepted September 16, 2019
- Published online February 24, 2020.
- Daniel J.P. Burns, MD, MPhila,
- Jason Arora, MD, MPHb,
- Oluwakemi Okunade, MD, MPHb,∗ (, )
- John F. Beltrame, BMBS, PhDc,
- Sabrina Bernardez-Pereira, MD, PhDd,
- Marisa G. Crespo-Leiro, MD, PhDe,
- Gerasimos S. Filippatos, MDf,
- Suzanna Hardman, MB, BS, PhDg,
- Arno W. Hoes, MD, PhDh,
- Stephen Hutchison, MBChBi,
- Mariell Jessup, MDj,
- Tina Kinsella, BSSk,∗,
- Michael Knapton, MBBChirl,
- Carolyn S.P. Lam, MBBS, PhDm,
- Frederick A. Masoudi, MD, MSPHn,
- Hugh McIntyre, MBBS, MDo,
- Richard Mindham, BSck,∗,
- Louise Morgan, MSNp,
- Luuk Otterspoor, MDq,
- Victoria Parker, MScr,
- Hans E. Persson, MD, PhDs,
- Claude Pinnock, MD, MPhilb,
- Christopher M. Reid, PhDt,
- Jillian Riley, RN, PhDu,
- Lynne W. Stevenson, MDv and
- Theresa A. McDonagh, MDw
- aDepartment of Thoracic and Cardiovascular Surgery, Cleveland Clinic, Cleveland, Ohio
- bInternational Consortium for Health Outcomes Measurement, London, United Kingdom
- cDepartment of Cardiology, University of Adelaide, Adelaide, Australia
- dDepartment of Cardiology, Hospital do Coração, Sao Paulo, Brazil
- eHospital Universitario de A Coruna, A Coruna Centro de Investifación Biomédica en Red Enfermedades Cardiovaculares, A Coruna, Spain
- fHeart Failure Unit, Attikon University Hospital, Athens, Greece
- gDepartment of Cardiovascular Medicine, Whittington Hospital, London, United Kingdom
- hJulius Center for Health Sciences and Primary Care, University Medical Center Utrecht, Utrecht, the Netherlands
- iDepartment of Cardiology, Aneurin Bevan Health Board–Nevill Hall Hospital, Abergavenny, Wales, United Kingdom
- jLeducq Corporation, Boston, Massachusetts
- kPatient Representative, Cardiomyopathy Association, United Kingdom
- lBritish Heart Foundation, London, United Kingdom
- mDepartment of Cardiology, National Heart Centre Singapore and Duke-National University of Singapore, Singapore
- nDivision of Cardiology, Department of Cardiology, University of Colorado Anschutz Medical Campus, Aurora, Colorado
- oEast Sussex Hospitals Trust, Hastings, United Kingdom
- pAmerican Heart Association, Dallas, Texas
- qDepartment of Cardiology, Catharina Hospital, Eindhoven, the Netherlands
- rNational Health Service England–London Diabetes Clinical Network, London, United Kingdom
- sDepartment of Clinical Sciences, Karolinska Institutet, Stockholm, Sweden
- tSchool of Public Health and Preventive Medicine, Monash University, Melbourne, Australia
- uFaculty of Medicine, Imperial College London, London, United Kingdom
- vDivision of Cardiovascular Medicine, Vanderbilt University, Nashville, Tennessee
- wCardiology Department, King’s College London, London, United Kingdom
- ↵∗Address for correspondence:
Dr. Oluwakemi Okunade, International Consortium for Health Outcomes Measurement, 14 Arrow Street, Suite 11, Cambridge, Massachusetts 02138.
• 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.
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.
↵∗ Denotes patient representative.
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.
- Received January 10, 2019.
- Revision received September 16, 2019.
- Accepted September 16, 2019.
- 2020 The Authors