ICHOM Standard Set for Congenital Heart Disease

Photo by Scott Streble


Published on April 28, 2020

We’re delighted to announce the launch today of ICHOM Standard Set for Congenital Heart Disease (CHDSS), created by the ICHOM Congenital Heart Disease Working Group of 30 leading physicians, measurement experts and patient representatives from 24 organizations in 15 countries. Children’s HeartLink is a co-sponsor and a member of this working group.

The CHDSS includes patient, parent and clinician-reported outcome measures that participants collected in four areas during routine clinical care: overall health, social health, mental health and physical health for both pediatric and adult patients with heart disease.

“Children’s HeartLink contributed to this project by representing the perspective of clinicians, patients and families from low- and middle-income countries. We look forward to helping our partners and other hospitals around the world adopt CHDSS to better understand how to improve the lives of their patients. This global measure set is a step forward in addressing congenital heart disease with a population health approach,” says Children’s HeartLink Vice President of Global Strategy and Advocacy Bistra Zheleva.

ICHOM, or International Consortium for Health Outcomes Measurement collaborates with patients and healthcare professionals to define and measure patient-reported outcomes to improve the quality and value of care.