Heart Defects, Congenital
Conditions
Keywords
Heart defects, congenital, Patient-reported outcomes, Health status, Factors, psychosocial, Health behavior, Quality of life, Sense of coherence, Illness perceptions, Depression, Anxiety
Brief summary
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).
Interventions
None listed
Sponsors
Philip Moons
Study design
Time perspective
CROSS_SECTIONAL
Eligibility
Sex/Gender
ALL
Age
18 Years to No maximum
Healthy volunteers
No
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
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| Patient-reported health status (EuroQol-5D) | Baseline |
| Patient-reported psychosocial functioning (Hospital Anxiety and Depression Scale) | Baseline |
| Patient-reported behavioral outcomes (Health Behavior Scale - Congenital Heart Disease) | Baseline |
| Patient-reported quality of life (Linear Analog Scale Quality of Life;Satisfaction with Life Scale) | Baseline |
Secondary
| Measure | Time frame |
|---|---|
| Patient-reported sense of coherence (Sense of Coherence scale 13 items) | Baseline |
| Patient-reported illness perceptions (Brief Illness Perception Questionnaire) | Baseline |
| Patient-reported socio-demographic variables (e.g. age, educational level) | Baseline |
| Medical variables by chart review (e.g. cardiac surgeries, frequency of follow-up) | Baseline |
Countries
Argentina, Australia, Belgium, Canada, France, India, Italy, Japan, Malta, Netherlands, Norway, Sweden, Switzerland, Taiwan, United States
Outcome results
None listed