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Review
. 2021 Jul 21;7(4):354-365.
doi: 10.1093/ehjqcco/qcab009.

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  1   2 , Sarah Whittaker  3 , Nick Sillett  3 , Amy Basken  4   5 , Malin Berghammer  6   7 , Tomás Chalela  8 , Julie Chauhan  9 , Luis Antonio Garcia  10 , Babar Hasan  11 , Kathy Jenkins  2 , Laila Akbar Ladak  11   12 , Nicolas Madsen  13 , Almudena March  10 , Disty Pearson  2 , Steven M Schwartz  14 , James D St Louis  15 , Ingrid van Beynum  16   17 , Amy Verstappen  18 , Roberta Williams  19 , Bistra Zheleva  20 , Lisa Hom  21 , Gerard R Martin  21
Affiliations
Review

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 et al. Eur Heart J Qual Care Clin Outcomes. .

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.

Keywords: Congenital heart disease; Outcomes; Patient-reported outcomes.

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