Development of a transition program for adolescents with congenital heart disease

Hosson, Michèle de; Backer, Julie De; Wolf, Daniël De; Groote, Katya De; Demulier, Laurent; Mels, Saskia; Vandekerckhove, Kristof; Goossens, Eva

doi:10.1007/s00431-019-03515-4

Cited by 16 publications

(28 citation statements)

References 34 publications

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“…They can be pivotal in the role of transition coordinator [21,25,31,32]. In line with our results, examples of transition programmes in the literature J o u r n a l P r e -p r o o f showed that such nurses in this role as transition coordinator offer individualised and structured support, guidance, and education to patients and parents [14][15][16]33]. Our survey also showed that some transition criteria regarding this aspect were met less frequently.…”

Section: Transfer and Transition Criteriasupporting

confidence: 84%

“…Of the 69 centres included, only J o u r n a l P r e -p r o o f one-third offered a formal transition programme [13]. Detailed information from several CHD transition programmes has been published, showing that nurse-led, one-to-one education is the most common intervention implemented [14][15][16][17]. This arrangement suggests that specialist nurses play a pivotal role in transitional care for patients with CHD [18].…”

Section: Introductionmentioning

confidence: 99%

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Transfer and transition practices in 96 European adult congenital heart disease centres

Thomet

Schwerzmann²,

Budts³

et al. 2021

International Journal of Cardiology

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Section: Transfer and Transition Criteriasupporting

confidence: 84%

Section: Introductionmentioning

confidence: 99%

Transfer and transition practices in 96 European adult congenital heart disease centres

Thomet

Schwerzmann²,

Budts³

et al. 2021

International Journal of Cardiology

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“…During adolescence, the pediatric cardiologist makes the call to start the transition process to adult services. For example, the transition program of Ghent University Hospital, which has been described in detail by de Hosson et al [27] developed gradually during the study period, before becoming fully operational in 2015. The development of such transition programs has taken many years, and is a major aspect of the continuously improving ACHD medical care system.…”

Section: Discussionmentioning

confidence: 99%

Long-Term Healthcare Utilization, Medical Cost, and Societal Cost in Adult Congenital Heart Disease

Willems

Ombelet²,

Goossens³

et al. 2020

Congenital Heart Disease

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Objective: Cost-of-illness studies in Adult Congenital Heart Disease (ACHD) have mainly been limited to hospitalizations. This is the first paper to provide a comprehensive overview from a societal perspective including inpatient and outpatient medical costs, and absenteeism-and unemployment-related societal costs. Methods: A retrospective longitudinal (2006)(2007)(2008)(2009)(2010)(2011)(2012)(2013)(2014)(2015) database analysis was performed in Belgium combining administrative and clinical databases (n = 10,572). Trends in resource use and costs per patient year were standardized to assess the impact of changes in the patient population composition. Generalized Linear Mixed Models assessed the impact of age, sex, lesion complexity, and time. Costs were converted to 2018 values. Results: Medical costs per patient year increased from V3490 to V4536 with a milder increase in patients with severe lesions. Although unemployment-related costs decreased, total societal costs increased due to more long-term (≥1 yr) invalidity. An increase in long-term invalidity was particularly found in patients ≥30 yrs and in patients with mild or moderate lesions. Resource use (e.g., dental care, nursing care, physiotherapy, emergency department) increased substantially in all patient groups over time. The annual percentage of patients with severe lesions receiving any cardiac and specialized cardiac follow-up increased with respectively 11 and 13 percent points to 81% and 52%, with a simultaneous decrease in hospitalization rate. Conclusion: Medical cost increases in ACHD are most pronounced in patients with mild and moderate lesions, relatable to their higher age. Economic data are necessary to allocate

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“…Our study data prove that there is a need for structured programmes that enable and/or ensure a successful transition as was recommended in the latest European Society of Cardiology (ESC) guidelines on ACHD (31). There are transition projects around the world, e.g., structured education programs (32), nurse-led interventions improving CHD knowledge (33) or the development of a mobile app to reach children and young adults (34), and they show promising results. Further development to establish a smooth and well-functioning transition process in Germany is still needed.…”

Section: Extracardiac Acquired Sdmentioning

confidence: 56%

Endangered patients with congenital heart defect during transition—Germany-wide evaluation of medical data from National Register for Congenital Heart Defects (NRCHD)

Remmele¹,

Schiele²,

Oberhoffer‐Fritz³

et al. 2021

Cardiovasc Diagn Ther

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Background: Appropriate care over the entire lifespan is essential in the population with congenital heart defect since the number of patients with congenital heart defect is increasing steadily worldwide. More than 90% survive into adulthood nowadays. The transition from pediatric to adult care in patients with congenital heart defect is a major challenge in clinical practice and often fails. Patients with congenital heart defect are generally at higher risk for different acquired secondary diagnoses. This cross-sectional retrospective study analysed data from the German National Register for Congenital Heart Defects to gain insight into the clinically relevant health-status of the transition population among congenital heart defect patients in Germany.Methods: Adolescents and young adults with congenital heart defect between the ages of 15 to 25 years (which have been defined as the transition generation) were identified using the National Register of Congenital Heart Defects medical database. Out of 55,687 patients with congenital heart defect, 8,834 adolescents and young adults with congenital heart defect [4,063 female (46.0%); 20.3±3.1 years] were included in the statistical analyses. Statistical analyses were conducted using the student's t-test, χ 2 -test and Fisher's exact test.Results: Severity of congenital heart defect: simple (23.4%), moderate (45.1%) and complex (31.5%). Most common congenital heart defect: atrial septal defects (14.9%) followed by ventricular septal defects (12.8%) and tetralogy of Fallot (10.5%). Most frequent acquired cardiac diagnosis: arrhythmia (25.5%) followed by secondly pulmonary hypertension (4.5%) and thirdly systemic arterial hypertension (3.6%). Almost 10% had chromosomal abnormalities and other genetic syndromes. Patients had neurological defects overall with 7.3%, followed by musculoskeletal defects with 6.9% and psychological disorders with 5.6%.Conclusions: Adolescents and young adults with congenital heart defect need to bridge the gap between pediatric and adult cardiology as they already show up to 4 cardiac and up to 7 extracardiac acquired secondary diagnoses during the transition period. Otherwise, early detection of an acquired secondary diagnosis, which affects the lives of young adults with congenital heart defect, fails with all its consequences.

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Development of a transition program for adolescents with congenital heart disease

Cited by 16 publications

References 34 publications

Transfer and transition practices in 96 European adult congenital heart disease centres

Transfer and transition practices in 96 European adult congenital heart disease centres

Long-Term Healthcare Utilization, Medical Cost, and Societal Cost in Adult Congenital Heart Disease

Endangered patients with congenital heart defect during transition—Germany-wide evaluation of medical data from National Register for Congenital Heart Defects (NRCHD)

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