{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,23]],"date-time":"2026-10-23T20:04:27Z","timestamp":1792785867905,"version":"4.5.0"},"reference-count":58,"publisher":"Oxford University Press (OUP)","issue":"4","license":[{"start":{"date-parts":[[2021,2,4]],"date-time":"2021-02-04T00:00:00Z","timestamp":1612396800000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/academic.oup.com\/journals\/pages\/open_access\/funder_policies\/chorus\/standard_publication_model"}],"funder":[{"name":"International Consortium for Health Outcomes Measurement"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2021,7,21]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Aims<\/jats:title>\n                    <jats:p>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.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods and results<\/jats:title>\n                    <jats:p>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.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>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.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1093\/ehjqcco\/qcab009","type":"journal-article","created":{"date-parts":[[2021,2,3]],"date-time":"2021-02-03T22:49:55Z","timestamp":1612392595000},"page":"354-365","source":"Crossref","is-referenced-by-count":44,"title":["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"],"prefix":"10.1093","volume":"7","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-3947-3927","authenticated-orcid":false,"given":"Kevin","family":"Hummel","sequence":"first","affiliation":[{"name":"Department of Pediatrics, University of Utah, Salt Lake City, UT, USA"},{"name":"Department of Pediatric Cardiology, Boston Children\u2019s Hospital, 300 Longwood Ave, Boston, MA, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sarah","family":"Whittaker","sequence":"additional","affiliation":[{"name":"International Consortium for Health Outcomes Measurement, Cambridge, MA, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nick","family":"Sillett","sequence":"additional","affiliation":[{"name":"International Consortium for Health Outcomes Measurement, Cambridge, MA, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Amy","family":"Basken","sequence":"additional","affiliation":[{"name":"Pediatric Congenital Heart Association, Madison, WI, USA"},{"name":"Conquering CHD, Madison, WI, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Malin","family":"Berghammer","sequence":"additional","affiliation":[{"name":"Queen Silvia Children Hospital\/Sahlgrenska University Hospital, Gothenburg, Sweden"},{"name":"University West, Trollh\u00e4ttan, Sweden"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Tom\u00e1s","family":"Chalela","sequence":"additional","affiliation":[{"name":"Fundacion Cardiofantil, Bogota, Colombia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Julie","family":"Chauhan","sequence":"additional","affiliation":[{"name":"All India Institute of Medical Sciences, New Delhi, India"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Luis Antonio","family":"Garcia","sequence":"additional","affiliation":[{"name":"Kardias A.C. 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