Objectives Appropriate care during the whole lifespan is essential in the population with congenital heart disease (CHD) since the number of CHD patients is increasing and more than 90% survive into adulthood due to medical advances. The transition from pediatric CHD care to adult CHD care is a major challenge in clinical practice and often fails, although particularly as growing-up CHD patients are at higher risk for different secondary diagnoses. This study analyzed data of adolescents and young adults with CHD, registered with the National Register for Congenital Heart Defects (NRCHD), to get more detailed information about the health-related status of the transition population in CHD patients in Germany.

Methods Adolescents and young adults with CHD between the ages of 15 and 25 years were identified using the NRCHD medical database, the largest register for CHD in Europe. Out of a total of 55687 registered CHD patients, 11262 adolescents and young adults with CHD (5233 females (46.5%); 20.4±3.4 years) were identified to be included in the statistical analyses. The CHD severity classification of Warnes et al. was used and secondary diagnoses were classified using the International Paediatric and Congenital Cardiac Code (IPCCC).

Results During transition time 202 (1.8%) adolescents and young adults with CHD died. Overall the CHD severity distribution was as follows: 33.9% simple CHD (S), 39.8% moderate CHD (M), 26.3% complex CHD (C). Group differences between the CHD severity classes: Number of surgeries (S vs M: OR:2.37 95%CI:2.16-2.61, p<.001; S vs C: OR:3.60 95%CI:3.26-3.97, p<.001; M vs C: OR:1.52 95%CI:1.47-1.57, p<.001), interventional treatments (S vs M: OR:1.30 95%CI:1.15-1.46, p<.001; S vs C: OR:1.83 95%CI:1.61-2.10, p<.001; M vs C: OR:1.41 95%CI:1.34-1.50, p<.001), acquired diagnoses (S vs M: OR:5.17 95%CI:4.49-5.96, p<.001; S vs C: OR:5.80 95%CI:5.01-6.70, p<.001; M vs C: OR:1.12 95%CI:1.10-1.20, p<.001), extracardiac secondary diagnoses showed no significant differences.

Conclusion These results underline that CHD patients also require continuous treatment in the transition phase and 2% died during transition time. It is very important for adolescents and young adults with CHD to bridge the gap between pediatric and adult cardiology and to find sustainable strategies so as not to lose these young patients during this transition phase