Transfer of adolescents with congenital heart disease from pediatric cardiology to adult health care: An analysis of transfer destinations. E. Goossens,

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

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

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

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

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

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

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

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

J Am Coll Cardiol 2011;57:2368-74

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]

J Am Coll Cardiol 2011;57:2368-74

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

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