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  • 1.
    Hummel, Kevin
    et al.
    Department of Pediatrics, University of Utah, Salt Lake City, Department of Pediatric Cardiology, Boston Children's Hospital, Boston (USA).
    Whittaker, Sarah
    International Consortium for Health Outcomes Measurement, Cambridge (USA).
    Sillett, Nick
    International Consortium for Health Outcomes Measurement, Cambridge (USA).
    Basken, Amy
    Pediatric Congenital Heart Association, Madison,Conquering CHD, Madison (USA) .
    Berghammer, Malin
    University West, Department of Health Sciences, Section for nursing - graduate level. Queen Silvia Children Hospital/Sahlgrenska University Hospital, Gothenburg (SWE).
    Chalela, Tomás
    Fundacion Cardiofantil, Bogota (COL).
    Chauhan, Julie
    All India Institute of Medical Sciences, New Delhi (IND).
    Garcia, Luis Antonio
    Kardias A.C. Foundation, Mexico City (MEX).
    Hasan, Babar
    Department of Pediatrics, Aga Khan University, Karachi City (PAK).
    Jenkins, Kathy
    Department of Pediatric Cardiology, Boston Children's Hospital, Boston (USA).
    Ladak, Laila Akbar
    Department of Pediatrics, Aga Khan University, Karachi City (PAK) Susan Wakil School of Nursing, The University of Sydney, Sydney (AUS).
    Madsen, Nicolas
    Department of Cardiology, Cincinnati Children's Hospital, Cincinnati (USA).
    March, Almudena
    Kardias A.C. Foundation, Mexico City (MEX).
    Pearson, Disty
    Department of Pediatric Cardiology, Boston Children's Hospital, Boston (USA).
    Schwartz, Steven M
    Department of Cardiology, The Hospital for Sick Children, Toronto (CAN).
    St Louis, James D
    Department of Surgery, Medical College of Georgia, Augusta (USA).
    van Beynum, Ingrid
    Department of Pediatric Cardiology, Erasmus Medical Centre, Rotterdam, Sophia Children's Hospital, Rotterdam (NLD).
    Verstappen, Amy
    Global Alliance for Rheumatic and Congenital Hearts, Philadelphia (USA).
    Williams, Roberta
    Department of Cardiology, Children's Hospital Los Angeles (USA).
    Zheleva, Bistra
    Children's HeartLink, Minneapolis (USA).
    Hom, Lisa
    Department of Cardiology, Children's National Hospital, Washington (USA).
    Martin, Gerard R
    Department of Cardiology, Children's National Hospital, Washington (USA).
    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.2021In: European Heart Journal - Quality of Care and Clinical Outcomes, ISSN 2058-5225, E-ISSN 2058-1742, Vol. 7, no 4, p. 354-365Article in journal (Refereed)
    Abstract [en]

    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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