1. Transfer of adolescents with congenital heart disease from pediatric cardiology to adult health care: An analysis of transfer destinations. E. Goossens, I. Stefani, D. Hilderson, M. Gewillig, W. Budts, K. Van Deyk, P. Moons on behalf of the SWITCH 2 investigators

2. Background  International guidelines emphasize the need for life-long cardiac follow-up by specialized practitioners in patients with congenital heart disease (CHD) (Warnes CA, J Am Coll Cardiol, 2005)  Adolescents reaching adulthood should have uninterrupted transfer to adult-focused facilities to avoid discontinuity of care (Knauth A, Cardiol Clin, 2006) 2

3. Background: 3 levels of adult CHD care Specialist care at a tertiary care center Shared care provided by general adult cardiologist in collaboration with tertiary center Nonspecialist care provided by general or community cardiologist or a general practitioner with access to specialized care if needed Deanfield J, Eur Heart J, 2003 Adult CHD program Pediatric CHD program Satellite center =specialized cardiologist at regional center General adult cardiologist with report to tertiary center General or community cardiologist or general practitioner without report to tertiary care center

4. Background  Published studies demonstrated that 21 to 76% of young adults with CHD discontinued follow-up after leaving pediatric cardiology Author, YearCountryPopulationProportion Reid, 2004CanadaComplex heart defects53% Wacker, 2005GermanyTotal population of CHD76% De Bono, 2005UKRepaired coarctation of the aorta39% Yeung, 2008USAModerate and complex heart defects63% Mackie, 2009CanadaComplex heart defects21% Goossens et al., 2011

5. Aim of the study 1. To investigate the destinations of transfer when patients are (assumed to) leaving pediatric cardiology 2. To determine the proportion of patients with no follow-up and with no appropriate follow-up 3. To explore the determinants of no follow-up and no appropriate follow-up Pediatric cardiology Transfer Adult- focused setting J Am Coll Cardiol 2011;57:2368-74

6. Methods  Design: Descriptive, observational, cross-sectional study at a tertiary care center, University Hospitals Leuven, Belgium  Setting: Pediatric and adult CHD program are located in one hospital Both programs share a database for clinical follow-up of patients According to a standardized protocol patients are transferred to ACHD at the age of 16 years, if medical condition is stable No formal transition program that prepares adolescents for the transfer  Sample: ° 1984-1988 planned to leave pediatric cardiology between 16 years adult care setting 2000-2004 J Am Coll Cardiol 2011;57:2368-74

7. Methods  Data collection: n = 794 Transfer destinations were retrospectively derived for 676 patients from database for pediatric cardiology and ACHD of University Hospitals Leuven, Belgium 118 patients were approached by a brief questionnaire or contacted by telephone asking additional information about the setting of cardiac follow-up n = 813 19 moved abroad, excluded from data- analysis J Am Coll Cardiol 2011;57:2368-74

8. Results: Sample characteristics Sex: 53% 47% Top 5 : primary CHD diagnosis of selected cohort Medical history: -37.9% of included patients underwent no intervention or surgery -7.6% underwent only a catheter intervention -47.7% underwent only a surgical intervention -6.8% of patients underwent both catheter and surgical intervention Type of CHDAbsolute number (n)Percentage (%) 1. VSD11814.9 2. Aortic valve abnormality10613.4 3. Pulmonary valve abnormality9411.8 4. Coarctation of the aorta9011.3 5. Tetralogy of Fallot729.1 J Am Coll Cardiol 2011;57:2368-74

9. Results: Sample characteristics mild complex moderate J Am Coll Cardiol 2011;57:2368-74

10. Results: Transfer destinations J Am Coll Cardiol 2011;57:2368-74

11. Results: Appropriate setting of follow-up in need for specialist care Patients who did not receive the minimum level of care J Am Coll Cardiol 2011;57:2368-74

12. Results: Appropriate setting of follow-up in need for specialist or shared care Patients who did not receive the minimum level of care J Am Coll Cardiol 2011;57:2368-74

13. Results: Appropriate setting of follow-up non-specialist care is sufficient Patients who did not receive the minimum level of care J Am Coll Cardiol 2011;57:2368-74

14. Results: Factors associated with no follow-up and no appropriate follow-up Patient characteristicsOR [95%CI] Male sex1.80 [1.02-3.17] No prior heart surgery5.97 [3.04-11.72] No follow-up No appropriate follow-up Patient characteristicsOR [95%CI] Male sex1.63 [1-2.63] No prior heart surgery3.30 [1.88-5.77] Greater complexity of CHD1.61 [1.04-2.49] J Am Coll Cardiol 2011;57:2368-74

15. Discussion  Results are substantially better than in other Western countries, but:  Belgium is a small country with a high population density  Good access to specialized care  Our tertiary care center has a pediatric and ACHD program at one location  Good collaboration with regional cardiologists  Limitations of this study: -Patients were selected from a database of one tertiary care center, so results are not generalizable -Inconsistencies between American, European guidelines and expert opinions J Am Coll Cardiol 2011;57:2368-74

16. Conclusions  7.3 % of patients are no longer in follow-up after leaving pediatric cardiology  86.1% is under surveillance of specialized follow-up  According to international guidelines, 10.2% (n=81) does not receive follow-up at the most appropriate setting  Development and implementation of a structured transition program can facilitate patients seeking appropriate specialized follow-up J Am Coll Cardiol 2011;57:2368-74