Endangered Patients with Congenital Heart Defect during Transition Period?—Results from the German National Register for Congenital Heart Defects

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 nowadays. 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 55,687 registered CHD patients, 11,262 adolescents and young adults with CHD (5,233 females [46.5%]; 20.4 ± 3.4 years) were identified to be included in the statistical analyses. The CHD severity classification by Warnes et al was used; Secondary diagnoses were classified by using the International Pediatric and Congenital Cardiac Code (IPCCC).

Result: 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), and 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 < 0.001; S vs. C: OR = 3.60, 95% CI: 3.26–3.97, p < 0.001; M vs. C: OR = 1.52, 95% CI: 1.47–1.57, p < 0.001), interventional treatments (S vs. M: OR = 1.30, 95% CI: 1.15–1.46, p < 0.001; S vs. C: OR = 1.83, 95% CI: 1.61–2.10, p < 0.001; M vs. C: OR = 1.41, 95% CI: 1.34–1.50, p < 0.001), acquired diagnoses (S vs. M: OR = 5.17, 95% CI: 4.49–5.96, p < 0.001; S vs. C: OR = 5.80, 95% CI: 5.01–6.70, p < 0.001; M vs. C: OR = 1.12, 95% CI: 1.10–1.20, p < 0.001), and 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.

Publication History

Article published online:
21 February 2021