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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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.

Hummel, Kevin (author): Department of Pediatrics, University of Utah, Salt Lake City, Department of Pediatric Cardiology, Boston Children's Hospital, Boston (USA)

Whittaker, Sarah (author): International Consortium for Health Outcomes Measurement, Cambridge (USA)

Sillett, Nick (author): International Consortium for Health Outcomes Measurement, Cambridge (USA)

Basken, Amy (author): Pediatric Congenital Heart Association, Madison,Conquering CHD, Madison (USA)

Berghammer, Malin, 1970- (author): Högskolan Väst,Avdelningen för omvårdnad - avancerad nivå,Queen Silvia Children Hospital/Sahlgrenska University Hospital, Gothenburg (SWE),LOV

Chalela, Tomás (author): Fundacion Cardiofantil, Bogota (COL)

Chauhan, Julie (author): All India Institute of Medical Sciences, New Delhi (IND)

Garcia, Luis Antonio (author): Kardias A.C. Foundation, Mexico City (MEX)

Hasan, Babar (author): Department of Pediatrics, Aga Khan University, Karachi City (PAK)

Jenkins, Kathy (author): Department of Pediatric Cardiology, Boston Children's Hospital, Boston (USA)

Ladak, Laila Akbar (author): Department of Pediatrics, Aga Khan University, Karachi City (PAK) Susan Wakil School of Nursing, The University of Sydney, Sydney (AUS)

Madsen, Nicolas (author): Department of Cardiology, Cincinnati Children's Hospital, Cincinnati (USA)

March, Almudena (author): Kardias A.C. Foundation, Mexico City (MEX)

Pearson, Disty (author): Department of Pediatric Cardiology, Boston Children's Hospital, Boston (USA)

Schwartz, Steven M (author): Department of Cardiology, The Hospital for Sick Children, Toronto (CAN)

St Louis, James D (author): Department of Surgery, Medical College of Georgia, Augusta (USA)

van Beynum, Ingrid (author): Department of Pediatric Cardiology, Erasmus Medical Centre, Rotterdam, Sophia Children's Hospital, Rotterdam (NLD)

Verstappen, Amy (author): Global Alliance for Rheumatic and Congenital Hearts, Philadelphia (USA)

Williams, Roberta (author): Department of Cardiology, Children's Hospital Los Angeles (USA)

Zheleva, Bistra (author): Children's HeartLink, Minneapolis (USA)

Hom, Lisa (author): Department of Cardiology, Children's National Hospital, Washington (USA)

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.
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:: https://urn.kb.se/re...; show more...; https://doi.org/10.1...; show less...

Journal article (peer-reviewed)

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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.

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MEDICAL AND HEALTH SCIENCES: MEDICAL AND HEAL ...; and Clinical Medicin ...; and Cardiac and Card ...

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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.

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