Marelli AJ, Ionescu-Ittu R, Mackie AS, et al. Lifetime prevalence of congenital heart disease in the general population from 2000 to 2010. Circulation 2014;130:749–56.
 Marelli AJ, Mackie AS, Ionescu-Ittu R, et al. Congenital Heart Disease in the General Population: Changing Prevalence and Age Distribution. Circulation 2006;115:163–72.
 Spector LG, Menk JS, Knight JH, et al. Trends in Long-Term Mortality After Congenital Heart Surgery. J Am Coll Cardiol 2018;71:2434–46.
 Moons P, Bovijn L, Budts W, et al. Temporal trends in survival to adulthood among patients born with congenital heart disease from 1970 to 1992 in Belgium. Circulation 2010;122:2264–72.
 Mackie AS, Ionescu-Ittu R, Therrien J, et al. Children and adults with congenital heart disease lost to follow-up: who and when? Circulation 2009;120:302–9.
 Werner O, Abassi H, Lavastre K, et al. Factors influencing the participation of adolescents and young adults with a congenital heart disease in a transition education program: A prospective multicentre controlled study. Patient Educ Couns 2019;102:2223–30.
 Saha P, Potiny P, Rigdon J, et al. Substantial Cardiovascular Morbidity in Adults With Lower-Complexity Congenital Heart Disease. Circulation 2019;139:1889–99.
 Wang T, Chen L, Yang T, et al. Congenital Heart Disease and Risk of Cardiovascular Disease: A Meta-Analysis of Cohort Studies. J Am Heart Assoc 2019;8:e012030.
 Sable C, Foster E, Uzark K, et al. Best Practices in Managing Transition to Adulthood for Adolescents With Congenital Heart Disease: The Transition Process and Medical and Psychosocial Issues: A Scientific Statement From the American Heart Association. Circulation 2011;123:1454–85.
 Endorsed by the Association for European Paediatric Cardiology (AEPC), Authors/Task Force Members, Baumgartner H, et al. ESC Guidelines for the management of grown-up congenital heart disease (new version 2010): The Task Force on the Management of Grown-up Congenital Heart Disease of the European Society of Cardiology (ESC). European Heart Journal 2010;31:2915–57.
 Uzark K, Smith C, Donohue J, et al. Assessment of Transition Readiness in Adolescents and Young Adults with Heart Disease. The Journal of Pediatrics 2015;167:1233–8.
 Hilderson D, Saidi AS, Van Deyk K, et al. Attitude Toward and Current Practice of Transfer and Transition of Adolescents with Congenital Heart Disease in the United States of America and Europe. Pediatric Cardiology 2009;30:786–93.
 Mackie AS, Rempel GR, Kovacs AH, et al. Transition Intervention for Adolescents With Congenital Heart Disease. J Am Coll Cardiol 2018;71:1768–77.
 Amedro P, Dorka R, Moniotte S, et al. Quality of Life of Children with Congenital Heart Diseases: A Multicenter Controlled Cross-Sectional Study. Pediatric Cardiology 2015;36:1588–601.
 Amedro P, Gavotto A, Legendre A, et al. Impact of a centre and home-based cardiac rehabilitation program on the quality of life of teenagers and young adults with congenital heart disease: The QUALI-REHAB study rationale, design and methods. Int J Cardiol 2019;283:112–8.
 McLoughlin A, Matthews C, Hickey TM. “They’re kept in a bubble”: Healthcare professionals’ views on transitioning young adults with congenital heart disease from paediatric to adult care. Child Care Health Dev 2018;44:736–45.
 Keir M, Bailey B, Lee A, et al. Narrative analysis of adults with complex congenital heart disease: Childhood experiences and their lifelong reverberations. Congenit Heart Dis 2018;13:740–7.
 Coyne I, Sheehan A, Heery E, et al. Healthcare transition for adolescents and young adults with long-term conditions: Qualitative study of patients, parents and healthcare professionals’ experiences. J Clin Nurs 2019;28:4062–76.
 Burns PB, Rohrich RJ, Chung KC. The levels of evidence and their role in evidence-based medicine. Plast Reconstr Surg 2011;128:305–10.
 Kabisch M, Ruckes C, Seibert-Grafe M, et al. Randomized controlled trials: part 17 of a series on evaluation of scientific publications. Dtsch Arztebl Int 2011;108:663–8.
 Houyel L, Khoshnood B, Anderson RH, et al. Population-based evaluation of a suggested anatomic and clinical classification of congenital heart defects based on the International Paediatric and Congenital Cardiac Code. Orphanet J Rare Dis 2011;6:64.
 Varni JW, Seid M, Kurtin PS. PedsQL 4.0: reliability and validity of the Pediatric Quality of Life Inventory version 4.0 generic core scales in healthy and patient populations. Med Care 2001;39:800–12.
 Tessier S, Vuillemin A, Lemelle J-L, et al. Propriétés psychométriques du questionnaire générique français « Pediatric Quality of Life Inventory Version 4.0» (PedsQLTM 4.0). Revue Européenne de Psychologie Appliquée/European Review of Applied Psychology 2009;59:291–300.
 Amedro P, Gavotto A, Guillaumont S, et al. Cardiopulmonary fitness in children with congenital heart diseases versus healthy children. Heart 2018;104:1026–36.
 Vuillemin A, Denis G, Guillemin F, et al. [A review of evaluation questionnaires for physical activity]. Rev Epidemiol Sante Publique 1998;46:49–55.
 Yang H-L, Chen Y-C, Wang J-K, et al. Measuring knowledge of patients with congenital heart disease and their parents: validity of the “Leuven Knowledge Questionnaire for Congenital Heart Disease.” Eur J Cardiovasc Nurs 2012;11:77–84.
 Kendall PC, Finch AJ, Auerbach SM, et al. The State-Trait Anxiety Inventory: a systematic evaluation. J Consult Clin Psychol 1976;44:406–12.
 Helsel WJ, Matson JL. The assessment of depression in children: the internal structure of the Child Depression Inventory (CDI). Behav Res Ther 1984;22:289–98.
 Delisle VC, Beck AT, Ziegelstein RC, et al. Symptoms of heart disease or its treatment may increase Beck Depression Inventory Scores in hospitalized post-myocardial infarction patients. J Psychosom Res 2012;73:157–62.
 Amedro P, Tahhan N, Bertet H, et al. Health-related quality of life among children with Turner syndrome: controlled cross-sectional study. Journal of Pediatric Endocrinology and Metabolism 2017;30.
 Amedro P, Picot MC, Moniotte S, et al. Correlation between cardio-pulmonary exercise test variables and health-related quality of life among children with congenital heart diseases. International Journal of Cardiology 2016;203:1052–60.
 Amedro P, Bajolle F, Bertet H, et al. Quality of life in children participating in a non-selective INR self-monitoring VKA-education programme. Arch Cardiovasc Dis 2018;111:180–8.
 Anker SD, Agewall S, Borggrefe M, et al. The importance of patient-reported outcomes: a call for their comprehensive integration in cardiovascular clinical trials. Eur Heart J 2014;35:2001–9.
 Abassi H, Gavotto A, Picot MC, et al. Impaired pulmonary function and its association with clinical outcomes, exercise capacity and quality of life in children with congenital heart disease. Int J Cardiol 2019;285:86–92.
 Apolone G, De Carli G, Brunetti M, et al. Health-related quality of life (HR-QOL) and regulatory issues. An assessment of the European Agency for the Evaluation of Medicinal Products (EMEA) recommendations on the use of HR-QOL measures in drug approval. Pharmacoeconomics 2001;19:187–95.
 Khankeh H, Ranjbar M, Khorasani-Zavareh D, et al. Challenges in conducting qualitative research in health: A conceptual paper. Iran J Nurs Midwifery Res 2015;20:635–41.
 Charakida M, Georgiopoulos G, Dangardt F, et al. Early vascular damage from smoking and alcohol in teenage years: the ALSPAC study. Eur Heart J 2019;40:345–53.
 Luther B, Barra J, Martial M-A. Essential Nursing Care Management and Coordination Roles and Responsibilities: A Content Analysis. Prof Case Manag 2019;24:249–58.
 Jarrín OF, Pouladi FA, Madigan EA. International priorities for home care education, research, practice, and management: Qualitative content analysis. Nurse Educ Today 2019;73:83–7.
 Logan DR. Transition From Hospital to Home: The Role of the Nurse Case Manager in Promoting Medication Adherence in the Medicare Population. Creat Nurs 2019;25:126–32.