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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 ...

  • 2021-02-04
  • Oxford University Press (OUP),2021
  • printrdacarrier

Numbers

  • LIBRIS-ID:oai:DiVA.org:hv-17362
  • https://urn.kb.se/resolve?urn=urn:nbn:se:hv:diva-17362URI
  • https://doi.org/10.1093/ehjqcco/qcab009DOI

Supplementary language notes

  • Language:English
  • Summary in:English

Part of subdatabase

Classification

  • Subject category:ref swepub-contenttype
  • Subject category:art swepub-publicationtype

Notes

  • 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 ...)

  • Whittaker, SarahInternational Consortium for Health Outcomes Measurement, Cambridge (USA) (author)
  • Sillett, NickInternational Consortium for Health Outcomes Measurement, Cambridge (USA) (author)
  • Basken, AmyPediatric Congenital Heart Association, Madison,Conquering CHD, Madison (USA) (author)
  • Berghammer, Malin,1970-Högskolan Väst,Avdelningen för omvårdnad - avancerad nivå,Queen Silvia Children Hospital/Sahlgrenska University Hospital, Gothenburg (SWE),LOV(Swepub:hv)malber (author)
  • Chalela, TomásFundacion Cardiofantil, Bogota (COL) (author)
  • Chauhan, JulieAll India Institute of Medical Sciences, New Delhi (IND) (author)
  • Garcia, Luis AntonioKardias A.C. Foundation, Mexico City (MEX) (author)
  • Hasan, BabarDepartment of Pediatrics, Aga Khan University, Karachi City (PAK) (author)
  • Jenkins, KathyDepartment of Pediatric Cardiology, Boston Children's Hospital, Boston (USA) (author)
  • Ladak, Laila AkbarDepartment of Pediatrics, Aga Khan University, Karachi City (PAK) Susan Wakil School of Nursing, The University of Sydney, Sydney (AUS) (author)
  • Madsen, NicolasDepartment of Cardiology, Cincinnati Children's Hospital, Cincinnati (USA) (author)
  • March, AlmudenaKardias A.C. Foundation, Mexico City (MEX) (author)
  • Pearson, DistyDepartment of Pediatric Cardiology, Boston Children's Hospital, Boston (USA) (author)
  • Schwartz, Steven MDepartment of Cardiology, The Hospital for Sick Children, Toronto (CAN) (author)
  • St Louis, James DDepartment of Surgery, Medical College of Georgia, Augusta (USA) (author)
  • van Beynum, IngridDepartment of Pediatric Cardiology, Erasmus Medical Centre, Rotterdam, Sophia Children's Hospital, Rotterdam (NLD) (author)
  • Verstappen, AmyGlobal Alliance for Rheumatic and Congenital Hearts, Philadelphia (USA) (author)
  • Williams, RobertaDepartment of Cardiology, Children's Hospital Los Angeles (USA) (author)
  • Zheleva, BistraChildren's HeartLink, Minneapolis (USA) (author)
  • Hom, LisaDepartment of Cardiology, Children's National Hospital, Washington (USA) (author)
  • Martin, Gerard RDepartment of Cardiology, Children's National Hospital, Washington (USA) (author)
  • 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

  • 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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