Assessment of Patterns of Patient Reported Outcomes in Adults With Congenital Heart Disease - International Study II

ID#: NCT04902768

Age: 18 years - 66+

Gender: All

Healthy Subjects: No

Recruitment Status: Recruiting

Start Date: August 01, 2019

End Date: December 31, 2021

Contact Information:
Philip Moons, PhD, RN
+32 16 37 33 15
Liesbet Van Bulck, MsC, RN
+32 16 32 63 06

This is an international, cross-sectional and descriptive study that aims to investigate differences in patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) and that aims to explore the profile and healthcare needs of adults with congenital heart diseases.


Inclusion Criteria:

- Diagnosed with congenital heart disease, defined as: "a gross structural abnormality of the heart and/or intra-thoracic great vessels that is actually or potentially of functional significance (including mild, moderate, and complex heart defects)"

- Aged 18 years of age or older at the moment of study inclusion

- Diagnosed with congenital heart disease before the age of 10 years

- Follow-up at an ACHD center or included in a national/regional registry

- Physical, cognitive, and language abilities to complete self-report questionnaires

Exclusion Criteria:

- Prior heart transplantation