Patient-Reported Outcomes in Adults With Congenital Heart Disease

Status:	Completed
Conditions:	Cardiology, Cardiology, Women's Studies
Therapuetic Areas:	Cardiology / Vascular Diseases, Reproductive
Healthy:	No
Age Range:	18 - Any
Updated:	2/8/2015
Start Date:	April 2013
End Date:	December 2014
Contact:	Philip Moons, PhD
Email:	philip.moons@med.kuleuven.be
Phone:	003216373315

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

The purpose of this study is to examine the differences in perceived health, psychosocial
functioning, behavioral outcomes and quality of life of adults with congenital heart disease
who are living in different areas of the world, and how these differences can be understood
(e.g., differences in sense of coherence or illness perceptions).

Inclusion Criteria:

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

- 18 years of age or older

- Diagnosed under the age of ten, i.e. before adolescence

- Continuing follow-up at an adult congenital heart disease center or included in a
national/regional registry

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

Exclusion Criteria:

- Prior heart transplantation

- Isolated pulmonary hypertension

- Syndromes affecting cognitive abilities

We found this trial at

sites

Cincinnati Children's Hospital Medical Center

3333 Burnet Avenue # Mlc3008
Cincinnati, Ohio 45229

1-513-636-4200