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Education of children with cyanotic congenital heart disease after neonatal cardiac surgery.

BACKGROUND: Aim of the study was to evaluate the educational achievement of patients diagnosed with univentricular heart physiology (UVHP) or transposition of the great arteries (TGA) after neonatal cardiac surgery METHODS: An exploratory online survey was performed with patients registered with the National Register for Congenital Heart Defects (NRCHD) in Germany. For this publication, a subgroup analysis was conducted among patients diagnosed with TGA (n=173; 36.3%) and UVHP (n=304; 63.7%).

RESULTS: Median age of the sample at school enrollment was 6 years (range 5-8). The majority were enrolled at a standard elementary school (n = 368/477; 77.1%), whereas patients with UVHP were enrolled significantly more often at a special needs school (n = 52/304; 17.1%, TGA patients n = 11/173; 6.4%, p<.001). 45.8% (n = 66/144) of the patients graduated with a high school diploma. A substantial number of patients had been diagnosed with behavioral or learning disorders (TGA patients n=63/173, 36.4%, UVPH patients n=148/304, 48.7%) and received early supportive therapy or remedial teaching before (TGA patients n=89/173, 51.4%, UVPH patients n=209/304, 68.8) and/or during their school careers (TGA patients n=54/173, 31.2%, UVPH patients n=120/304, 39.5%).

CONCLUSIONS: A large proportion of patients who underwent neonatal cardiac surgery graduated with a high school diploma. These results are of great importance to CHD patients, affected families and treating physicians. However, study participants, especially patients with UVHP, face some with academic challenges. We conclude that long-term follow-up examinations and regular developmental assessments may be beneficial.

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