transfer of adolescents with congenital heart disease from pediatric cardiology to adult health...
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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 SWITCH2 investigators
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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
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Background: 3 levels of adult CHD care
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
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Background
Published studies demonstrated that 21 to 76% of young adults with CHD discontinued follow-up after leaving pediatric cardiology
Author, Year Country Population Proportion
Reid, 2004 Canada Complex heart defects 53%
Wacker, 2005 Germany Total population of CHD 76%
De Bono, 2005 UK Repaired coarctation of the aorta 39%
Yeung, 2008 USA Moderate and complex heart defects 63%
Mackie, 2009 Canada Complex heart defects 21%
Goossens et al., 2011
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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
J Am Coll Cardiol 2011;57:2368-74
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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
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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
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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 CHD Absolute number (n) Percentage (%)
1. VSD 118 14.9
2. Aortic valve abnormality 106 13.4
3. Pulmonary valve abnormality 94 11.8
4. Coarctation of the aorta 90 11.3
5. Tetralogy of Fallot 72 9.1
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Results: Sample characteristics
9.3%
56.4%
34.3%
Complexity of heart defect according to Task Force 1 32nd Bethesda Conference
mild
complex
moderate
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Results: Transfer destinations
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Results: Appropriate setting of follow-upin need for specialist care
Patients who did not receive the minimum level of care
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Results: Appropriate setting of follow-up in need for specialist or shared care
Patients who did not receive the minimum level of care
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Results: Appropriate setting of follow-up non-specialist care is sufficient
Patients who did not receive the minimum level of care
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Results: Factors associated with no follow-up and no appropriate follow-up
Patient characteristics OR [95%CI]
Male sex 1.80 [1.02-3.17]
No prior heart surgery 5.97 [3.04-11.72]
No follow-up
No appropriate follow-upPatient characteristics OR [95%CI]
Male sex 1.63 [1-2.63]
No prior heart surgery 3.30 [1.88-5.77]
Greater complexity of CHD 1.61 [1.04-2.49]
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Discussion
Results are substantially better than in other Western countries, but:Belgium is a small country with a high population
densityGood access to specialized careOur tertiary care center has a pediatric and ACHD
program at one locationGood 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 opinionsJ Am Coll Cardiol 2011;57:2368-74
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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