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

Abstract

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.

Recommendations for developing effective and safe paediatric and congenital heart disease services in low-income and middle-income countries: a public health framework

“…At this level, a heart centre quality council should have a strong oversight of all aspects of quality audits across the programme. 59 Efforts should be made to track holistic, lifelong patient-centric outcomes. The International Consortium of Health Outcome Measures CHD standard sets and the American College of Cardiology/American Heart Association guidelines for management of adults with CHD can be used to track lifelong care including physical, mental and social aspects of health of patients with CHD.…”

“…The International Consortium of Health Outcome Measures CHD standard sets and the American College of Cardiology/American Heart Association guidelines for management of adults with CHD can be used to track lifelong care including physical, mental and social aspects of health of patients with CHD. 59 60 …”

Pediatric cardiology: In search for evidence

“…[ 23 ] The International Consortium for Health Outcome Measurements, in 2020, released a standard set of defined outcome measures for pediatric and adults with CHD. [ 24 ]…”

Hypoplastic Left Heart Syndrome Across the Lifespan: Clinical Considerations for Care of the Fetus, Child, and Adult

“…Specifically designed studies are necessary to explore HR-QOL and should include validated scoring systems such as those developed by the Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart Disease-International Study (APPROACH-IS) 103 and the International Consortium for Health Outcomes Measurement. 104 Such data will be important for guidance of management strategies for this atrisk patient population.…”