Development of an international standard set of clinical and patient-reported outcomes for children and adults with congenital heart disease: A report from the international consortium for health outcomes measurement congenital heart disease working group

Document Type



Paediatrics and Child Health; School of Nursing and Midwifery, Pakistan


Aims: Congenital heart disease (CHD) is the most common congenital malformation. Despite the worldwide burden to patient wellbeing and health system resource utilization, tracking of long-term outcomes is lacking, limiting the delivery and measurement of high-value care. To begin transitioning to value-based healthcare in CHD, the International Consortium for Health Outcomes Measurement aligned an international collaborative of CHD experts, patient representatives, and other stakeholders to construct a standard set of outcomes and risk-adjustment variables that are meaningful to patients.
Methods and results: The primary aim was to identify a minimum standard set of outcomes to be used by health systems worldwide. The methodological process included four key steps: 1) develop a working group representative of all CHD stakeholders; 2) conduct extensive literature reviews to identify scope, outcomes of interest, tools used to measure outcomes, and case-mix adjustment variables; 3) create the outcome set using a series of multi-round Delphi processes; and 4) disseminate set worldwide. The WG established a 15-item outcome set, incorporating physical, mental, social, and overall health outcomes accompanied by tools for measurement and case-mix adjustment variables. Patients with any CHD diagnoses of all ages are included. Following an open review process, over 80% of patients and providers surveyed agreed with the set in its final form.
Conclusion: This is the first international development of a stakeholder-informed standard set of outcomes for CHD. It can serve as a first step for a lifespan outcomes measurement approach to guide benchmarking and improvement among health systems.


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Publication (Name of Journal)

European Heart Journal - Quality of Care and Clinical Outcomes