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Development of an i...
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Hummel, KevinDepartment of Pediatrics, University of Utah, Salt Lake City, Department of Pediatric Cardiology, Boston Children's Hospital, Boston (USA)
(author)
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.
- Article/chapterEnglish2021
Publisher, publication year, extent ...
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2021-02-04
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Oxford University Press (OUP),2021
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printrdacarrier
Numbers
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LIBRIS-ID:oai:DiVA.org:hv-17362
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https://urn.kb.se/resolve?urn=urn:nbn:se:hv:diva-17362URI
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https://doi.org/10.1093/ehjqcco/qcab009DOI
Supplementary language notes
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Language:English
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Summary in:English
Part of subdatabase
Classification
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Subject category:ref swepub-contenttype
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Subject category:art swepub-publicationtype
Notes
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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.
Subject headings and genre
Added entries (persons, corporate bodies, meetings, titles ...)
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Whittaker, SarahInternational Consortium for Health Outcomes Measurement, Cambridge (USA)
(author)
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Sillett, NickInternational Consortium for Health Outcomes Measurement, Cambridge (USA)
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Basken, AmyPediatric Congenital Heart Association, Madison,Conquering CHD, Madison (USA)
(author)
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Berghammer, Malin,1970-Högskolan Väst,Avdelningen för omvårdnad - avancerad nivå,Queen Silvia Children Hospital/Sahlgrenska University Hospital, Gothenburg (SWE),LOV(Swepub:hv)malber
(author)
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Chalela, TomásFundacion Cardiofantil, Bogota (COL)
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Chauhan, JulieAll India Institute of Medical Sciences, New Delhi (IND)
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Garcia, Luis AntonioKardias A.C. Foundation, Mexico City (MEX)
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Hasan, BabarDepartment of Pediatrics, Aga Khan University, Karachi City (PAK)
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Jenkins, KathyDepartment of Pediatric Cardiology, Boston Children's Hospital, Boston (USA)
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Ladak, Laila AkbarDepartment of Pediatrics, Aga Khan University, Karachi City (PAK) Susan Wakil School of Nursing, The University of Sydney, Sydney (AUS)
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Madsen, NicolasDepartment of Cardiology, Cincinnati Children's Hospital, Cincinnati (USA)
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March, AlmudenaKardias A.C. Foundation, Mexico City (MEX)
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Pearson, DistyDepartment of Pediatric Cardiology, Boston Children's Hospital, Boston (USA)
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Schwartz, Steven MDepartment of Cardiology, The Hospital for Sick Children, Toronto (CAN)
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St Louis, James DDepartment of Surgery, Medical College of Georgia, Augusta (USA)
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van Beynum, IngridDepartment of Pediatric Cardiology, Erasmus Medical Centre, Rotterdam, Sophia Children's Hospital, Rotterdam (NLD)
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Verstappen, AmyGlobal Alliance for Rheumatic and Congenital Hearts, Philadelphia (USA)
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Williams, RobertaDepartment of Cardiology, Children's Hospital Los Angeles (USA)
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Zheleva, BistraChildren's HeartLink, Minneapolis (USA)
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Hom, LisaDepartment of Cardiology, Children's National Hospital, Washington (USA)
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Martin, Gerard RDepartment of Cardiology, Children's National Hospital, Washington (USA)
(author)
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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)
(creator_code:org_t)
Related titles
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In:European Heart Journal - Quality of Care and Clinical Outcomes: Oxford University Press (OUP)7:4, s. 354-3652058-52252058-1742
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Hummel, Kevin
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Whittaker, Sarah
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Sillett, Nick
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Basken, Amy
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Berghammer, Mali ...
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Chalela, Tomás
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Chauhan, Julie
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Garcia, Luis Ant ...
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Hasan, Babar
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Jenkins, Kathy
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Ladak, Laila Akb ...
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Madsen, Nicolas
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March, Almudena
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Pearson, Disty
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Schwartz, Steven ...
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St Louis, James ...
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van Beynum, Ingr ...
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Verstappen, Amy
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Williams, Robert ...
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Zheleva, Bistra
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Hom, Lisa
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Martin, Gerard R
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