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Development of an i...
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.
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- Hummel, Kevin (author)
- Department of Pediatrics, University of Utah, Salt Lake City, Department of Pediatric Cardiology, Boston Children's Hospital, Boston (USA)
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- Whittaker, Sarah (author)
- International Consortium for Health Outcomes Measurement, Cambridge (USA)
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- Sillett, Nick (author)
- International Consortium for Health Outcomes Measurement, Cambridge (USA)
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- Basken, Amy (author)
- Pediatric Congenital Heart Association, Madison,Conquering CHD, Madison (USA)
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- Berghammer, Malin, 1970- (author)
- Högskolan Väst,Avdelningen för omvårdnad - avancerad nivå,Queen Silvia Children Hospital/Sahlgrenska University Hospital, Gothenburg (SWE),LOV
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- Chalela, Tomás (author)
- Fundacion Cardiofantil, Bogota (COL)
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- Chauhan, Julie (author)
- All India Institute of Medical Sciences, New Delhi (IND)
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- Garcia, Luis Antonio (author)
- Kardias A.C. Foundation, Mexico City (MEX)
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- Hasan, Babar (author)
- Department of Pediatrics, Aga Khan University, Karachi City (PAK)
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- Jenkins, Kathy (author)
- Department of Pediatric Cardiology, Boston Children's Hospital, Boston (USA)
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- Ladak, Laila Akbar (author)
- Department of Pediatrics, Aga Khan University, Karachi City (PAK) Susan Wakil School of Nursing, The University of Sydney, Sydney (AUS)
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- Madsen, Nicolas (author)
- Department of Cardiology, Cincinnati Children's Hospital, Cincinnati (USA)
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- March, Almudena (author)
- Kardias A.C. Foundation, Mexico City (MEX)
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- Pearson, Disty (author)
- Department of Pediatric Cardiology, Boston Children's Hospital, Boston (USA)
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- Schwartz, Steven M (author)
- Department of Cardiology, The Hospital for Sick Children, Toronto (CAN)
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- St Louis, James D (author)
- Department of Surgery, Medical College of Georgia, Augusta (USA)
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- van Beynum, Ingrid (author)
- Department of Pediatric Cardiology, Erasmus Medical Centre, Rotterdam, Sophia Children's Hospital, Rotterdam (NLD)
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- Verstappen, Amy (author)
- Global Alliance for Rheumatic and Congenital Hearts, Philadelphia (USA)
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- Williams, Roberta (author)
- Department of Cardiology, Children's Hospital Los Angeles (USA)
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- Zheleva, Bistra (author)
- Children's HeartLink, Minneapolis (USA)
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- Hom, Lisa (author)
- Department of Cardiology, Children's National Hospital, Washington (USA)
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- Martin, Gerard R (author)
- Department of Cardiology, Children's National Hospital, Washington (USA)
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(creator_code:org_t)
- 2021-02-04
- 2021
- English.
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In: European Heart Journal - Quality of Care and Clinical Outcomes. - : Oxford University Press (OUP). - 2058-5225 .- 2058-1742. ; 7:4, s. 354-365
- Related links:
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https://urn.kb.se/re...
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https://doi.org/10.1...
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Abstract
Subject headings
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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
- MEDICIN OCH HÄLSOVETENSKAP -- Klinisk medicin -- Kardiologi (hsv//swe)
- MEDICAL AND HEALTH SCIENCES -- Clinical Medicine -- Cardiac and Cardiovascular Systems (hsv//eng)
Keyword
- Congenital heart disease
- Outcomes
- Patient-reported outcomes
- Vårdvetenskap
- Nursing science
Publication and Content Type
- ref (subject category)
- art (subject category)
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- By the author/editor
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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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show more...
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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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- About the subject
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- MEDICAL AND HEALTH SCIENCES
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MEDICAL AND HEAL ...
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and Clinical Medicin ...
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and Cardiac and Card ...
- Articles in the publication
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European Heart J ...
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