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.

Autor:	Hummel K; Department of Pediatrics, University of Utah, Salt Lake City, UT, USA.; Department of Pediatric Cardiology, Boston Children's Hospital, 300 Longwood Ave, Boston, MA, USA., Whittaker S; International Consortium for Health Outcomes Measurement, Cambridge, MA, USA., Sillett N; International Consortium for Health Outcomes Measurement, Cambridge, MA, USA., Basken A; Pediatric Congenital Heart Association, Madison, WI, USA.; Conquering CHD, Madison, WI, USA., Berghammer M; Queen Silvia Children Hospital/Sahlgrenska University Hospital, Gothenburg, Sweden.; University West, Trollhättan, Sweden., Chalela T; Fundacion Cardiofantil, Bogota, Colombia., Chauhan J; All India Institute of Medical Sciences, New Delhi, India., Garcia LA; Kardias A.C. Foundation, Mexico City, Mexico., Hasan B; Department of Pediatrics, Aga Khan University, Karachi City, Pakistan., Jenkins K; Department of Pediatric Cardiology, Boston Children's Hospital, 300 Longwood Ave, Boston, MA, USA., Ladak LA; Department of Pediatrics, Aga Khan University, Karachi City, Pakistan.; Susan Wakil School of Nursing, The University of Sydney, Sydney, Australia., Madsen N; Department of Cardiology, Cincinnati Children's Hospital, Cincinnati, OH, USA., March A; Kardias A.C. Foundation, Mexico City, Mexico., Pearson D; Department of Pediatric Cardiology, Boston Children's Hospital, 300 Longwood Ave, Boston, MA, USA., Schwartz SM; Department of Cardiology, The Hospital for Sick Children, Toronto, ON, Canada., St Louis JD; Department of Surgery, Medical College of Georgia, Augusta, GA, USA., van Beynum I; Department of Pediatric Cardiology, Erasmus Medical Centre, Rotterdam, Netherlands.; Sophia Children's Hospital, Rotterdam, Netherlands., Verstappen A; Global Alliance for Rheumatic and Congenital Hearts, Philadelphia PA, USA., Williams R; Department of Cardiology, Children's Hospital Los Angeles, Los Angeles, CA, USA., Zheleva B; Children's HeartLink, Minneapolis, MN, USA., Hom L; Department of Cardiology, Children's National Hospital, Washington, DC, USA., Martin GR; Department of Cardiology, Children's National Hospital, Washington, DC, USA.
Jazyk:	angličtina
Zdroj:	European heart journal. Quality of care & clinical outcomes [Eur Heart J Qual Care Clin Outcomes] 2021 Jul 21; Vol. 7 (4), pp. 354-365.
DOI:	10.1093/ehjqcco/qcab009
Abstrakt:	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. (Published on behalf of the European Society of Cardiology. All rights reserved. © The Author(s) 2021. For permissions, please email: journals.permissions@oup.com.)
Databáze:	MEDLINE
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