Assessment of Patterns of Patient Reported Outcomes in Adults With Congenital Heart Disease - International Study II
Recruitment Status: Recruiting
Start Date: August 01, 2019
End Date: December 31, 2021
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
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Conditions:
- Heart Diseases
- Heart Defects, Congenital