A Long-Term Nationwide Follow-Up Study of Simple Congenital Heart Disease Diagnosed in Otherwise Healthy Children
Background—Systematic follow-up is currently not recommended for patients with simple congenital heart disease (CHD); however, only a few data exist on the long-term prognosis of simple CHD.
Methods and Results—We undertook a nationwide follow-up study of a cohort of 1,241 sim-ple CHD patients, diagnosed from 1963 through 1973, in otherwise healthy children and alive at 15 years of age. We identified 10 age- and gender-matched general population con-trols per patient. We followed the study population through Danish public registries from the age of 15 years up to January 1st 2013 with respect to mortality, cause of death, morbidity, and medical follow-up. The patients were followed for a total of 58,422 patient-years and had a median age at the end of follow-up of 47.4 years (inter-quartile range: 43.5-50.9). Mortal-ity was increased compared with the general population, both overall [adjusted hazard ratio (aHR):1.9 (95%CI 1.5-2.4)] and for patients (79%) without medical follow-up [aHR:1.7 (95%CI 1.3-2.2)]. The most common cause of death (40%) was sudden unexpected death [aHR: 4.3 (95%CI 2.9-6.5)]. The incidence of critical cardiac morbidity was 3.9 per 1,000 patient-years with the most frequent events being an adult (re)operation, and hospitalization for heart failure or ventricular tachyarrhythmia. This corresponded to an aHR of 5.7 (95%CI 4.6-6.9) when compared with the general population.
Conclusions—Patients diagnosed with simple CHD in the 1960s have substantially increased long-term mortality and cardiac morbidity compared with the general population. Further studies on the effectiveness of systematic medical follow-up programs appear warranted.
- adult congenital heart disease
- follow-up study
- death, sudden
- heart defects, congenital
- Received April 27, 2015.
- Revision received November 9, 2015.
- Accepted November 20, 2015.