The ICHOM Set of Patient-Centered Outcome Measures 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 persons with CHD. We urge all providers around the world to start measuring these outcomes to better understand how to improve the lives of their patients.

1) Pediatric Quality of Life measured by the Satisfaction with Life – Child

2) Adult Quality of Life measured by the Satisfaction with Life Scale

3) Pediatric Health-Related Quality of Life/Perceived Health Status measured by Pediatric Cardiac Quality of Life Inventory (PCQLI)

4) Adult Health-Related Quality of Life/Perceived Health Status measured by the PROMIS Scale v1.2 – Global Health

5) Productivity measured by the Work Productivity and Activity Impairment Questionnaire – General Health v2.0

6) Depression measured by the Patient Health Questionnaire (PHQ-9)

7) Anxiety measured by the General Anxiety Disorder (GAD-7)

A = Adult outcomes

P = Pediatric outcomes

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All of the basic information you need to implement ICHOM Sets is available in the links above. However, for a faster, more easily integrated process, we offer digitised versions of the Set measures. These are designed for immediate upload to existing EMR systems. This is available as part of our Accreditation package, which recognises your work in putting patient outcomes at the heart of treatment.

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Team that developed this set

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

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

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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