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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.
Department of Pediatrics, University of Utah, Salt Lake City, Department of Pediatric Cardiology, Boston Children's Hospital, Boston (USA).
International Consortium for Health Outcomes Measurement, Cambridge (USA).
International Consortium for Health Outcomes Measurement, Cambridge (USA).
Pediatric Congenital Heart Association, Madison,Conquering CHD, Madison (USA) .
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2021 (English)In: European Heart Journal - Quality of Care and Clinical Outcomes, ISSN 2058-5225, E-ISSN 2058-1742, Vol. 7, no 4, p. 354-365Article in journal (Refereed) Published
Abstract [en]

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: (i) develop a working group representative of all CHD stakeholders; (ii) conduct extensive literature reviews to identify scope, outcomes of interest, tools used to measure outcomes, and case-mix adjustment variables; (iii) create the outcome set using a series of multi-round Delphi processes; and (iv) disseminate set worldwide. The Working Group 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.

Place, publisher, year, edition, pages
2021. Vol. 7, no 4, p. 354-365
Keywords [en]
Congenital heart disease, Outcomes, Patient-reported outcomes
National Category
Cardiac and Cardiovascular Systems
Research subject
NURSING AND PUBLIC HEALTH SCIENCE, Nursing science
Identifiers
URN: urn:nbn:se:hv:diva-17362DOI: 10.1093/ehjqcco/qcab009ISI: 000684096600010PubMedID: 33576374Scopus ID: 2-s2.0-85107029085OAI: oai:DiVA.org:hv-17362DiVA, id: diva2:1587765
Available from: 2021-08-25 Created: 2021-08-25 Last updated: 2022-01-18Bibliographically approved

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