SavedAdd your journal

Journals / CURARE Journal of Nursing / 2026 / Sayı: 7

Long-Term Problems in Children and Adolescents with Congenital Heart Disease and the Role of Pediatric Nurses in the Follow-Up

Merve Ertunç Soycan(Istanbul University, School of Nursing, Department of Pediatric Nursing)0000-0003-4969-0885
Ayfer Aydın(Istanbul University, School of Nursing, Department of Pediatric Nursing)0000-0002-2995-361X
Pages
61–69
Publication Date
2025-02-28
🏛️Bibliographic metadata and full text access for this article are provided via DergiPark.
DergiPark Record ↗
✨

AI Summary & Key Takeaways

AI Insight
⚡ TL;DR(Too Long; Didn't Read)

This review provides practical recommendations for nursing care and highlights the need for a multidisciplinary approach to improve the quality of life.

📌 3 Key Takeaways

🎯
Objective & Hypothesis:Due to advances in care and technology, the life expectancy of children with congenital heart disease has been prolonged, which has brought long-term problems to the agenda at the same time.
📊
Key Findings & Data:In the long-term follow-up of children with congenital heart disease, physical health problems such as growthdevelopmental retardation, neurodevelopmental issues, oral and dental health problems, decreased physical activity, obesity, and malnutrition, as well as psychosocial issues such as decreased social relationships, depression, anxiety, and attention deficit were observed.
💡
Conclusion & Impact:This review provides practical recommendations for nursing care and highlights the need for a multidisciplinary approach to improve the quality of life.
🔬Design:Review & Systematic Survey
📍Scope:Comprehensive Sample
⚙️Variables:Congenital heart disease · children · adolescent

Abstract

Due to advances in care and technology, the life expectancy of children with congenital heart disease has been prolonged, which has brought long-term problems to the agenda at the same time. In the long-term follow-up of children with congenital heart disease, physical health problems such as growthdevelopmental retardation, neurodevelopmental issues, oral and dental health problems, decreased physical activity, obesity, and malnutrition, as well as psychosocial issues such as decreased social relationships, depression, anxiety, and attention deficit were observed. These problems negatively affect children’s healthy lifestyle behaviours. Children and adolescents with congenital heart disease can gain healthy lifestyle behaviours through health counselling. Therefore, this article highlights the long-term problems in children and adolescents with congenital heart disease and the role of pediatric nurses in their follow-up. This review provides practical recommendations for nursing care and highlights the need for a multidisciplinary approach to improve the quality of life.

🔖

Cite This Article

Soycan, M. E., Aydın, A. (2025). Long-Term Problems in Children and Adolescents with Congenital Heart Disease and the Role of Pediatric Nurses in the Follow-Up. CURARE Journal of Nursing, Sayı: 7, 61–69. https://doi.org/10.26650/CURARE.2024.1561380

📄 Full Text PDF Viewer

📄

PDF görüntüleyici hazırlanıyor...

References (52)

  1. 1 Bouma BJ, Mulder BJ. Changing landscape of congenital heart disease. Circ Res 2017;120(6):908-922. https://doi.org/10.1161/CİRCRESAHA.116.309302 google scholar
  2. 2 ÖzalkaYa E, Akdağ A, Şen İ, Cömert E, Melek Yaren H. EarlY screening for critical congenital heart defects in asYmptomatic newborns in Bursa province. J Matern Fetal Neonatal Med 2016;29(7):1105-7. https://doi.org/10.3109/14767058. 2015.1035642 google scholar
  3. 3 Dilli D, Dogan V, OzYurt BM, OzYurt A, Hakan N, Bozabali S. et al. Should we start a nationwide screening program for critical congenital heart disease in TurkeY? A pilot studY on four centers with different altitudes. Cardiol Young 2019;29(4):475-480. https://doi.org/10.1017/S1047951119000052 google scholar
  4. 4 Palleri D, Bartolacelli Y, Balducci A, Bonetti S, Zanoni R, Ciuca C. et al. Moderate and severe congenital heart diseases adverselY affect the growth of children in İtalY: a retrospective monocentric studY. Nutrients 2023;15(3):484. https://doi. org/10.3390/nu15030484 google scholar
  5. 5 Willinger L, BrudY L, MeYer M, Oberhoffer-Fritz R, Ewert P, Müller J. Overweight and ObesitY in Patients with Congenital Heart Disease: A SYstematic Review. İnt J Environ Res Public Health 2021;18(18):9931. https://doi.org/10.3390/ijerph 18189931 google scholar
  6. 6 Kovacs AH, Brouillette J, İbeziako P, Jackson JL, Kasparian NA, Kim YY. et al. PsYchological outcomes and interventions for individuals with congenital heart disease: A Scientific Statement From the American Heart Association. Circ Cardiovasc Qual Outcomes 2022;15(8):e000110. https://doi.org/10.1161/HCQ. 0000000000000110 google scholar
  7. 7 Liamlahi R, Latal B. Neurodevelopmental outcome of children with congenital heart disease. Handb Clin Neurol 2019;162:329-345. https://doi.org/10.1016/B 978-0-444-64029-1.00016-3 google scholar
  8. 8 Amodeo G, Ragni B, Calcagni G, Piga S, Giannico S, Yammine ML. et al. Health-related qualitY of life in İtalian children and adolescents with congenital heart diseases. BMC Cardiovasc Disord 2022;22(1):173. https://doi.org/10.1186/s12872-022-02611-Y google scholar
  9. 9 Su Z, Zhang Y, Cai X, Li Q, Gu H, Luan Y. et al. İmproving long-term care and outcomes of congenital heart disease: fulfilling the promise of a healthY life. Lancet Child Adolesc Health 2023;7(7):502- 518. https://doi.org/10.1016/S2352-4642(23)00053-6 google scholar
  10. 10 Karikoski E, Sarkola T, Blomqvist M. Dental caries prevalence in children with congenital heart disease - a sYstematic review. Acta Odontol Scand 2021;79(3):232-240. https://doi.org/10.1080/00016357.2020.1849792 google scholar
  11. 11 Havers-Borgersen E, Butt JH, 0stergaard L, Petersen JK, Torp-Pedersen C, K0ber L. et al. Long-term incidence of infective endocarditis among patients with congenital heart disease. Am Heart J 2023;259:9-20. https://doi.org/10.1016/j.ahj. 2023.01.012 google scholar
  12. 12 Diao J, Chen L, Wei J, Shu J, Li Y, Li J. et al. Prevalence of malnutrition in children with congenital heart disease: a sYstematic review and meta-analYsis. J Pediatr 2022;242:39-47.e4. https://doi.org/10.1016/j.jpeds.2021.10.065 google scholar
  13. 13 Salvatori G, De Rose DU, Massolo AC, Patel N, Capolupo İ, Giliberti P. et al. Current strategies to optimize nutrition and growth in newborns and infants with congenital heart disease: a narrative review. J Clin Med 2022;11(7):1841. https://doi.org/10.3390/jcm11071841 google scholar
  14. 14 Schroeder ML, Baker AL, Bastardi H, O'Brien P. The child with cardiovascular dYsfunction. İn: HockenberrY MJ, Wilson D, Rodgers CC, editors. Wong's nursing care of infants and children.11th ed. Canada: Elsevier;2019.p.958- 1019. google scholar
  15. 15 Murni İK, Patmasari L, Wirawan MT, Arafuri N, Nurani N, Sativa ER. et al. Outcome and factors associated with undernutrition among children with congenital heart disease. PLoS One 2023;18(2):e0281753. https://doi.org/10.1371/journal. pone.0281753 google scholar
  16. 16 Steele JM, Preminger TJ, Erenberg FG, Wang L, Dell K, Alsaied T, et al. ObesitY trends in children, adolescents, and Young adults with congenital heart disease. Congenit Heart Dis 2019;14(4):517-24. https://doi.org/10.1111/chd.12754 google scholar
  17. 17 Andonian C, Langer F, Beckmann J, Bischoff G, Ewert P, Freilinger S. et al. Overweight and obesitY: an emerging problem in patients with congenital heart disease. Cardiovasc Diagn Ther 2019;9(Suppl 2):360-368. https://doi.org/ 10.21037/cdt.2019.02.02 google scholar
  18. 18 Le Roy C, Larios G, Claverıa C, Springmüller D. Short stature among children undergoing cardiac surgerY for congenital heart defects. Arch Argent Pediatr 2019;117(3):e211-e217. https://doi.org/10.5546/aap.2019.eng.e211 google scholar
  19. 19 ShakYa S, Saxena A, Gulati S, Kothari SS, Ramakrishnan S, Gupta SK. et al. Neurodevelopmental outcomes in children with cYanotic congenital heart disease following open heart surgerY. Ann Pediatr Cardiol 2022;15(1):4-12. https://doi.org/10.4103/apc.apc_149_21 google scholar
  20. 20 Budts W, Pieles GE, Roos-Hesselink JW, Sanz de la Garza M, D'Ascenzi F, Giannakoulas G. et al. Recommendations for participation in competitive sport in adolescent and adult athletes with Congenital Heart Disease (CHD): position statement of the Sports Cardiology & Exercise Section of the European Association of Preventive Cardiology (EAPC), the European Society of Cardiology (ESC) Working Group on Adult Congenital Heart Disease and the Sports Cardiology, Physical Activity and Prevention Working Group of the Association for European Paediatric and Congenital Cardiology (AEPC). Eur Heart J 2020;41(43):4191-4199. https://doi.org/10.1093/eurheartj/ehaa501 google scholar
  21. 21 Dold SK, Haas NA, Apitz C. Effects of sports, exercise training, and physical activity in children with congenital heart disease-a review of the published evidence. Children 2023;10(2):296. https://doi.org/10.3390/children10020296 google scholar
  22. 22 Mery CM, Well A, Taylor K, Carberry K, Colucci J, Ulack C, et al. Examining the real-life journey of individuals and families affected by single-ventricle congenital heart disease. J Am Heart Assoc 2023;12(5):e027556. https://doi.org/10.1161/JAHA. 122.027556 google scholar
  23. 23 van der Mheen M, Meentken MG, van Beynum IM, van der Ende J, van Galen E, Zirar A. et al. CHIP-Family intervention to improve the psychosocial well-being of young children with congenital heart disease and their families: results of a randomized controlled trial. Cardiol Young 2019;29(9):1172-1182. https://doi.org/ 10.1017/S1047951119001732 google scholar
  24. 24 Dixon G, Christov G. Infective endocarditis in children: an update. Curr Opin Infect Dis 2017;30(3):257-267. https://doi.org/10.1097/QCO.0000000000000370 google scholar
  25. 25 Maser M, Freisinger E, Bronstein L, Köppe J, Orwat S, Kaleschke G, et al. Frequency, mortality, and predictors of adverse outcomes for endocarditis in patients with congenital heart disease: results of a nationwide analysis including 2512 endocarditis cases. J Clin Med 2021;10(21):5071. https://doi.org/ 10.3390/jcm10215071 google scholar
  26. 26 Karikoski E, Sarkola T, Blomqvist M. Oral health behavior during early childhood in children with major congenital heart defects. Int J Paediatr Dent. 2023;33(3):278-288. https://doi.org/10.1111/ipd.13062 google scholar
  27. 27 Güven Y. Kronik sağlık sorunu olan çocukta ağız diş sağlığı. In: Gökçay EB, Keskindemirci H, editors. Kronik hastalığı olan çocuğun izlemi ve toplumda bakımı. Istanbul: Istanbul University Press;2024.p.693-714. google scholar
  28. 28 Sethi M, Sood S, Sharma N, Singh A, Sharma P, Kukshal P. Oral health status and dental anomalies among children with congenital heart disease in contemporary times. Spec Care Dentist 2022 Early View. https://doi.org/10.1111/ scd.12815 google scholar
  29. 29 Sood E, Newburger JW, Anixt JS, Cassidy AR, Jackson JL, Jonas RA. et al. Neurodevelopmental outcomes for individuals with congenital heart disease: updates in neuroprotection, risk-stratification, evaluation, and management: A Scientific Statement From the American Heart Association. Circulation 2024;149(13):e997-e1022. https://doi.org/10.1161/CIR.0000000000001211 google scholar
  30. 30 Loblein HJ, Vukmirovich PW, Donofrio MT, Sanz JH. Prevalence of neurodevelopmental disorders in a clinically referred sample of children with CHD. Cardiol Young 2023;33(4):619-626. https:// doi.org/10.1017/ S1047951122001469 google scholar
  31. 31 Gonzalez VJ, Kimbro RT, Cutitta KE, Shabosky JC, Bilal MF, Penny DJ. et al. Mental health disorders in children with congenital heart disease. Pediatrics 2021;147(2):e20201693. https://doi.org/10.1542/peds.2020-1693 google scholar
  32. 32 Omann C, Kristensen R, Tabor A, Gaynor JW, Hjortdal VE, Nyboe C. School performance is impaired in children with simple and complex congenital heart disease. Front Pediatr 2023;11:1073046. https://doi.org/10.3389/fped.2023. 1073046 google scholar
  33. 33 Chong LSH, Fitzgerald DA, Craig JC, Manera KE, Hanson CS, Celermajer D. et al. Children’s experiences of congenital heart disease: a systematic review of qualitative studies. Eur J Pediatr 2018;177(3):319-336. https://doi.org/10.1007/s 00431-017-3081-y google scholar
  34. 34 Grant VR, Crerand CE, Jackson JL. Implications of cardiac scarring on body image disturbance among young adults with congenital heart defects. J Cardiovasc Nurs. 2024; 39(6):E212-E217. https://doi.org/10.1097/JCN.0000000000001091 google scholar
  35. 35 Goossens E, Luyckx K, Mommen N, Gewillig M, Budts W, Zupancic N. et al. Health risk behaviors in adolescents and emerging adults with congenital heart disease: psychometric properties of the Health Behavior Scale Congenital Heart Disease. Eur J Cardiovasc Nurs 2013;12(6):544-57. https://doi.org/10.1177/ 1474515113475934 google scholar
  36. 36 Gaskin K, Kennedy F. Care of infants, children and adults with congenital heart disease. Nurs Stand 2019;34(8):37-42. https://doi.org/10.7748/ns.2019.e11405 google scholar
  37. 37 Ball JW, Bindler, RC, Kowen KJ, Shaw MR. Principles of pediatric nursing caring for children. 7th ed. New Jersey:Pearson; 2017. google scholar
  38. 38 Lincoln P, Braudis N, Brown LD, Bullock K, Evans J, Guan YM. et al. Pediatric cardiac intensive çare - postoperative management: Nursing considerations. In: da Cruz E, Ivy D, Hraska V, Jaggers J, editors. Pediatric and congenital cardiology, cardiac surgery and intensive care. London: Springer. https://doi. org/10.1007/978-1-4471-4999-6_161-2 google scholar
  39. 39 Medoff-Cooper B, Ravishankar C. Nutrition and growth in congenital heart disease: a challenge in children. Curr Opin Cardiol. 2013;28(2):122-129. https:// doi.org/10.1097/HCO.0b013e32835dd005 google scholar
  40. 40 Flocco, SF, Goossens, E. Nursing care for patients with congenital heart disease during follow-up: Transfer and transition. In: Flocco, S., Lillo, A., Dellafiore, F., Goossens, E. (eds) Congenital Heart Disease. Springer, Cham; 2019. https://doi. org/10.1007/978-3-319-78423-6_16 google scholar
  41. 41 Abdelmoneim HM, Hawary BE, Soliman, AME. Assessment of nutrition state in children with heart diseases. EJHM, 2019;77(2):5049-5055. google scholar
  42. 42 van Egmond-van Dam JC, Vliet Vlieland TPM, Kuipers IM, Blom NA, Ten Harkel ADJ. Improvement of physical activity levels in children and adolescents after surgery for congenital heart disease: preferences and use of physical therapy. Disabil Rehabil. 2022;44(18):5101-5108. https://doi.org/10.1080/09638288.2021. 1924298 google scholar
  43. 43 Hodge T. Fast facts for the cardiac surgery nurse: caring for cardiac surgery patients. New York:Springer Publishing Company; 2019. google scholar
  44. 44 Atia A, Younis G, Salama M, Fouad Z. Effect of Implementing Educational Program on Nurses' performance and Clinical Outcomes for Patients with Acute Infective Endocarditis. Tanta Scientific Nursing Journal. 2022;26(3):226-41. google scholar
  45. 45 Haresaku S, Uchida S, Aoki H, Akinaga K, Yoshida R, Kubota K, Naito T. Factors associated with nurses' performance of oral assessments and dental referrals for hospital inpatients. BMC Oral Health. 2020;20(1):68. https://doi.org/10.1186/ s12903-020-1058-0 google scholar
  46. 46 Moron EM, Singer R. An interprofessional school-based initiative to increase access to oral health care in underserved Florida counties. J Public Health Dent. 2023;83(2):155-160. https://doi.org/10.1111/jphd.12562 google scholar
  47. 47 Basile NL, Brown Kirschman KJ, Dempster NR. Psychosocial, neurodevelopmental, and transition of care practices provided to children with CHD across North American cardiac clinics. Cardiol Young. 2023;33(2):235-241. https://doi.org/10.1017/S1047951122000488 google scholar
  48. 48 Parvizy S, Tarvirdinasab S, Raznahan R, Aliakbari M. The effect of pain management training in workshop on the knowledge, attitude and self-efficacy of pediatric nurses. J Family Med Prim Care. 2020;9(6):2880-2884. https://doi. org/10.4103/jfmpc.jfmpc_92_20 google scholar
  49. 49 Koet LBM, Bennenbroek JJM, Bruggeman AYS, de Schepper EIT, Bohnen AM, Bindels PJE, Gerger H. GPs' and practice nurses' views on their management of paediatric anxiety problems: an interview study. BMC Prim Care. 2022;23(1):235. https://doi.org/10.1186/s12875-022-01802-y google scholar
  50. 14 Schroeder ML, Baker AL, Bastardi H, O'Brien P. The child with cardiovascular dYsfunction. İn: HockenberrY MJ, Wilson D, Rodgers CC, editors. Wong's nursing care of infants and children.11th ed. Canada: Elsevier;2019.p.958- 1019. google scholar
  51. 29 Sood E, Newburger JW, Anixt JS, Cassidy AR, Jackson JL, Jonas RA. et al. Neurodevelopmental outcomes for individuals with congenital heart disease: updates in neuroprotection, risk-stratification, evaluation, and management: A Scientific Statement From the American Heart Association. Circulation 2024;149(13):e997-e1022. https://doi.org/10.1161/CIR.0000000000001211 google scholar
  52. 33 Chong LSH, Fitzgerald DA, Craig JC, Manera KE, Hanson CS, Celermajer D. et al. Children’s experiences of congenital heart disease: a systematic review of qualitative studies. Eur J Pediatr 2018;177(3):319-336. https://doi.org/10.1007/s 00431-017-3081-y google scholar