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

Kevin Hummel, Sarah Whittaker, Nick Sillett, Amy Basken, Malin Berghammer, Tomás Chalela, Julie Chauhan, Luis Antonio Garcia, Babar Hasan, Kathy Jenkins, Laila Akbar Ladak, Nicolas Madsen, Almudena March, Disty Pearson, Steven M. Schwartz, James D. St Louis, Ingrid Van Beynum, Amy Verstappen, Roberta Williams, Bistra ZhelevaLisa Hom, Gerard R. Martin

Research output: Contribution to journalArticlepeer-review

3 Scopus citations

Abstract

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.

Original languageEnglish (US)
Pages (from-to)354-365
Number of pages12
JournalEuropean Heart Journal - Quality of Care and Clinical Outcomes
Volume7
Issue number4
DOIs
StatePublished - Oct 1 2021
Externally publishedYes

Keywords

  • Congenital heart disease
  • Outcomes
  • Patient-reported outcomes

ASJC Scopus subject areas

  • Health Policy
  • Cardiology and Cardiovascular Medicine

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