Congenital Heart Disease

The standard set

The ICHOM Standard Set for Congenital Heart Disease is the result of hard work by a group of leading physicians, measurement experts and patients. It is our recommendation of the outcomes that matter most to adult and pediatric patients with Congenital Heart Disease. We urge all providers around the world to start measuring these outcomes to better understand how to improve the lives of their patients.

Patient Population

A: Adult Outcome
P: Pediatric Outcome

Patient Reported Outcome Measures (PROMs)

  1. Measured by the Satisfaction with Life - Child
  2. Measured by the Satisfaction with Life Scale
  3. Measured by the Pediatric Cardiac Quality of Life Inventory (PCQLI)
  4. Measured by the PROMIS scale v1.2- Global Health
  5. Measured by the Work Productivity and Activity Impairment Questionnaire- General Health v2.0
  6. Measured by the Patient Health Questionnaire (PHQ-9)
  7. Measured by the General Anxiety Disorder (GAD-7)

For more information on implementing this standard set, please click on the button below:

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To view our launch press release, please click on the button below:


Standard Set materials have moved to ICHOM Connect and are still available free of charge. Please log in or register to gain access to unlimited ICHOM resources at a single click of a button. There, you can also indicate your interest in receiving updates about and implementing the Standard Set.

Available materials:

  • Flyer – a brief overview of the most important outcomes for patients relating to this ICHOM Standard Set.
  • Reference Guide – a complete overview of the ICHOM Standard Set, including definitions for each measure and selected PROM instruments, time points for collection, and associated risk factors.
  • Data Dictionary – an index of the outcomes and case-mix variables included in the standard set, how to code them, and the information you need to collect when implementing the outcomes in practice.
  • Press Release
  • Published Articles
  • Additional materials

Team that developed this standard

Project team

Chair | Gerard Martin | Children’s National Hospital
Research Fellow | Kevin Hummel | University of Utah
Project Manager | Sarah Whittaker | ICHOM
Project Team Member | Lisa Hom | ICHOM
Research Associate | Shannon Quinney | ICHOM
Research Associate | Nick Sillett | ICHOM


Ulisses Alexandre Croti | Hospital da Criança e Maternidade


Steven Schwartz | The Hospital for Sick Children


Tomás Chalela | Fundación Cardioinfantil


Julie Chauhan | All India Institute of Medical Science, New Delhi


Luis Antonio Garcia | Kardias A.C. Foundation
Almudena March | Kardias A.C. Foundation
Juan Samaniego De La Parra*


Ingrid van Beynum | Erasmus University MC, Sophia Children’s Hospital, Rotterdam


Farhan Ahmad | Pakistan Children's Heart Foundation*
Babar Hasan | The Aga Khan University
Laila Ladak | The Aga Khan University


Ekaterina Anikeeva | Research Institute for Complex Issues of Cardiovascular Diseases

South Africa

Monique Kemp | Global ARCH*


Joan Sanchez de Toledo | Hospital Sant Joan de Déu


Malin Berghammer | University West, Queen Silvia Children's Hospital*


Markus Schwerzmann | Center for Congenital Heart Disease, University Hospital Inselspital, University of Bern


Michael Oketcho | Uganda Heart Institute

United States

Amy Basken | Conquering CHD*
Kathy Jenkins | Boston Children's Hospital
Richard Jonas | World Society for Pediatric and Congenital Heart Surgery
Nicolas L. Madsen | Cincinnati Children's Hospital
Disty Pearson | Boston Children's Hospital*
James D. St Louis | Children’s Mercy Hospital, Kansas City
Amy Verstappen | Global ARCH*
Roberta Williams | Children's Hospital Los Angeles, University of Southern California
Bistra Zheleva | Children’s HeartLink


Mai Hương Trần | National Children’s Hospital
*Patient representative

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