CHD at birth
Conditions
Interventions
Sponsors
Eligibility
Inclusion criteria
Inclusion criteria: ? Diagnosed with CDH within the first 7 days of life and alive at time of recruitment ? Born between 1989 and 2001 (patient recruitment is ongoing in 2019; minimum age is 18 years) ? Sufficient intellectual capacities and/or command of the Dutch language to understand instructions ? Clinically stable for > 3 weeks
Exclusion criteria
Exclusion criteria: ? Serious comorbidity that might affect assessments (e.g. serious neurological comorbidity)
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| Reduced maximal exercise capacity (VO2max) | — |
Secondary
| Measure | Time frame |
|---|---|
| Persistent pulmonary morbidity as reflected by: ? Irreversible small airway obstruction (FEV1 before and after bronchodilation, FEF25-75 before and after bronchodilatation) ? Reduced diffusion capacity of the lungs after correction for total lung capacity (DLOCc, KCORCL) ? Abnormal pulmonary structure on chest CT (separate volume fractions of total airways disease (%Dis), and trapped air (%TA)) ? Abnormal morphology of the repaired diaphragm ? Echocardiographic signs of pulmonary hypertension and ventricular dysfunction4 ? Total and subdomain scores participation (IPA) ? Health status (physical and mental scale of RAND-36) ? Total score fatigue (FSS) ? Dyspnea score ? Total score and domain scores social emotional wellbeing (scores on ASR) ? Airway artery (AA) dimensions using the AA-method ? Growth and nutritional status (BOD-POD) | — |
Contacts
Erasmus MC