International Consortium for Health Outcomes Measurement (ICHOM): Standardized Patient-Centered Outcomes Measurement Set for Heart Failure Patients

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.

Keywords: epidemiology; heart failure; quality and outcomes.

Graphical abstract

Figure 1

Working Group Teleconference Flow Diagram A flow diagram outlining the decision making process across the 7 teleconferences.

Central Illustration

The ICHOM Standard Outcome Set for Heart Failure List of outcomes included in the heart failure standard set. ICHOM = International Consortium for Health Outcomes Measurement; KCCQ-12 = Kansas City Cardiomyopathy Questionnaire; N/A = not applicable; NYHA = New York Heart Association; PHQ-2 = Patient Health Questionnaire; PROMIS = Patient-Reported Outcomes Measurement Information System; SOB = shortness of breath.

Figure 2

Sample Timeline for Outcome Measurement Follow-up chronology from entry into the outcome set, including variables to be measured at each time point. PROM = patient-reported outcome measure.