LONG-TERM QUALITY OF LIFE AND PSYCHOSOCIAL DEVELOPMENT IN CHILDREN FOLLOWING CONGENITAL HEART DISEASE SURGERY – A NARRATIVE REVIEW
DOI:
https://doi.org/10.31435/ijitss.2(50).2026.5505Keywords:
Congenital Heart Disease, Pediatric Cardiology, Psychosocial Development, Pediatric Surgery, Health and Well-Being, TelemedicineAbstract
Background: Advances in pediatric cardiac surgery have reduced congenital heart disease (CHD) mortality, shifting clinical focus toward optimizing long-term health-related quality of life (HRQoL). However, patients and caregivers still face significant psychosocial and neurodevelopmental challenges requiring holistic, technology-enhanced care.
Aim: To synthesize current literature on the long-term psychosocial development of children following CHD surgery and evaluate the impact of technological interventions (e.g., telemedicine, e-Health) on mitigating these challenges for patients and families.
Methods: This narrative review synthesizes evidence from recent systematic reviews, meta-analyses, and prospective cohort studies (emphasizing the 2021–2026 period) retrieved from PubMed, Scopus, and Web of Science. The review evaluates pediatric HRQoL, caregiver burden, and digital health interventions.
Results: Despite physical improvements, CHD survivors face neurodevelopmental delays and peer marginalization. Parental stress profoundly impacts families; mothers of children with CHD exhibit significantly lower HRQoL in emotional role difficulty (SMD: -0.79) and general health (SMD: -0.58). Conversely, targeted interventions yield measurable benefits. Structured physical training in Fontan patients increases peak oxygen uptake by 1.72 ml/kg/min (6.3%). Furthermore, digital health solutions (mobile apps, wearables) significantly enhance patient engagement and disease management during the transition to adulthood.
Conclusion: Enhancing the psychosocial well-being of CHD survivors and caregivers is crucial. Comprehensive postoperative care must evolve to integrate continuous psychological support, family-centered care, and modern technological solutions (e.g., interactive telehealth, advanced neuromonitoring) to ensure a satisfying quality of life.
References
Bosch, R., Lenderink, M. J., Claessens, N. H. P., Breur, J. M. P. J., van Loon, K., van Wijk, A., Alderliesten, T., & Nijman, J. (2026). Perioperative monitoring of regional oxygen saturation in congenital heart disease: Systematic review of literature up to 2023. Pediatric Critical Care Medicine, 27(3), 325–335. https://doi.org/10.1097/PCC.0000000000003888
Bufler, P., Howard, R., Quadrado, L., Lacey, G., Terner-Rosenthal, J., Goldstein, A., Vig, P., & Kelly, D. (2025). The burden of Alagille syndrome: Uncovering the potential of emerging therapeutics—A comprehensive systematic literature review. Journal of Comparative Effectiveness Research, 14(2), Article e240188. https://doi.org/10.57264/cer-2024-0188
Dai, W. S., Lin, W. H., Lin, S. H., et al. (2023). Postoperative health-related quality of life in children with congenital heart disease: A short-term follow-up study. Journal of Cardiothoracic Surgery, 18, Article 17. https://doi.org/10.1186/s13019-023-02110-x
de Man, M. A. C. P., Segers, E. W., Schappin, R., van der Leeden, K., Wösten-van Asperen, R. M., Breur, H., de Weerth, C., & van den Hoogen, A. (2021). Parental experiences of their infant's hospital admission undergoing cardiac surgery: A systematic review. Acta Paediatrica, 110(6), 1730–1740. https://doi.org/10.1111/apa.15694
Dijkhuizen, E. I., de Munck, S., de Jonge, R. C. J., Dulfer, K., van Beynum, I. M., Hunfeld, M., Rietman, A. B., Joosten, K. F. M., & van Haren, N. E. M. (2023). Early brain magnetic resonance imaging findings and neurodevelopmental outcome in children with congenital heart disease: A systematic review. Developmental Medicine & Child Neurology, 65(12), 1557–1572. https://doi.org/10.1111/dmcn.15588
Eagleson, K. J., McCombs, D., Gerlich, T. M., Justo, R. N., Kasparian, N. A., & Bora, S. (2023). Systematic review of instruments assessing psychosocial adaptation and outcomes among families of children with congenital heart disease. Journal of Pediatric Psychology, 48(6), 537–552. https://doi.org/10.1093/jpepsy/jsad015
Garcia Rodrigues, M., Rodrigues, J. D., Monteiro Soares, M., Azevedo, L. F., Pereira Rodrigues, P., Areias, J. C., & Areias, M. E. (2023). Improving the quality of life of parents of patients with congenital abnormalities using psychoeducational interventions: A systematic review. Quality of Life Research, 32(11), 3027–3037. https://doi.org/10.1007/s11136-023-03452-8
Ghasemi Shayan, R., Fatollahzadeh Dizaji, M., & Sajjadian, F. (2025). Surgical and postoperative management of congenital heart disease: A systematic review of observational studies. Langenbeck's Archives of Surgery, 410(1), Article 113. https://doi.org/10.1007/s00423-025-03673-0
Garcia Guerra, G., Robertson, C. M., Alton, G. Y., Joffe, A. R., Dinu, I. A., Nicholas, D., Ross, D. B., Rebeyka, I. M., & Western Canadian Complex Pediatric Therapies Follow-up Group. (2013). Quality of life 4 years after complex heart surgery in infancy. The Journal of Thoracic and Cardiovascular Surgery, 145(2), 482–488.e2. https://doi.org/10.1016/j.jtcvs.2012.03.050
Hu, J., Pang, J., Zhou, L., Kuang, H., Yu, W., & Peng, Y. (2025). Prenatal characterization of Houge-Janssens syndrome type 2: A case report and systematic review of fetal phenotypes associated with PPP2R1A mutations. Molecular Genetics & Genomic Medicine, 13(8), Article e70129. https://doi.org/10.1002/mgg3.70129
Kaeslin, R., Latal, B., & Mitteregger, E. (2023). A systematic review of early motor interventions for infants with congenital heart disease and open-heart surgery. Systematic Reviews, 12(1), Article 149. https://doi.org/10.1186/s13643-023-02320-3
Kalhor, F., Tagharrobi, Z., Ghaderian, M., Taghadosi, M., Shahzeydi, A., Mah-Najafabadi, A., & Sharifi, S. (2025). Ethical dilemmas in continuing pregnancy after a prenatal diagnosis of congenital heart defects: A systematic review and narrative synthesis. BMC Medical Ethics, 26(1), Article 174. https://doi.org/10.1186/s12910-025-01327-w
Gramszlo, C., Karpyn, A., Demianczyk, A. C., Shillingford, A., Riegel, E., Kazak, A. E., & Sood, E. (2020). Parent perspectives on family-based psychosocial interventions for congenital heart disease. The Journal of Pediatrics, 216, 51–57.e2. https://doi.org/10.1016/j.jpeds.2019.09.059
Kolaitis, G. A., Meentken, M. G., & Utens, E. M. (2017). Mental health problems in parents of children with congenital heart disease. Frontiers in Pediatrics, 5, Article 102. https://doi.org/10.3389/fped.2017.00102
Koushiou, M., Manzoor, S., Jossif, A., & Ferreira, N. (2024). Cognitive functioning in children and young people with congenital heart disease: A systematic review of meta-analyses. Healthcare, 12(24), Article 2594. https://doi.org/10.3390/healthcare12242594
Latal, B., Helfricht, S., Fischer, J. E., Bauersfeld, U., & Landolt, M. A. (2009). Psychological adjustment and quality of life in children and adolescents following open-heart surgery for congenital heart disease: A systematic review. BMC Pediatrics, 9, Article 6. https://doi.org/10.1186/1471-2431-9-6
Leo, D. G., Islam, U., Lotto, R. R., Lotto, A., & Lane, D. A. (2023). Psychological interventions for depression in adolescent and adult congenital heart disease. Cochrane Database of Systematic Reviews, 2023(10), Article CD004372. https://doi.org/10.1002/14651858.CD004372.pub3
Mendel, B., Christianto, Setiawan, M., Siagian, S. N., & Prakoso, R. (2022). Pharmacology management in improving exercise capacity of patients with Fontan circulation: A systematic review and meta-analysis. Current Cardiology Reviews, 18(5), 34–49. https://doi.org/10.2174/1573403X18666220404101610
Quinn, C., Millen, S., Dempster, M., Doherty, N., & Casey, F. (2025). Psychological interventions to improve parental wellbeing after fetal abnormality diagnosis: A systematic scoping review. Journal of Reproductive and Infant Psychology. Advance online publication. https://doi.org/10.1080/02646838.2025.2550990
Scheffers, L. E., Vd Berg, L. E. M., Ismailova, G., Dulfer, K., Takkenberg, J. J. M., & Helbing, W. A. (2021). Physical exercise training in patients with a Fontan circulation: A systematic review. European Journal of Preventive Cardiology, 28(11), 1269–1278. https://doi.org/10.1177/2047487320942869
Schöneburg, C., Willinger, L., Uphoff, I., Oberhoffer-Fritz, R., Ewert, P., & Müller, J. (2025). Interactive telehealth solutions for patients with congenital heart disease: A systematic review. CJC Pediatric and Congenital Heart Disease, 4(2), 69–80. https://doi.org/10.1016/j.cjcpc.2024.11.005
Sharples, L., Sastry, P., Freeman, C., Gray, J., McCarthy, A., Chiu, Y.-D., Bicknell, C., McMeekin, P., Vallabhaneni, S. R., Cook, A., Vale, L., & Large, S. (2022). Endovascular stent grafting and open surgical replacement for chronic thoracic aortic aneurysms: A systematic review and prospective cohort study. Health Technology Assessment, 26(6), 1–166. https://doi.org/10.3310/ABUT7744
Siyah, T., Vardar Yagli, N., Ertugrul, I., Aykan, H. H., & Saglam, M. (2024). Examining the role of exercise training in enhancing life for adult congenital heart disease: Systematic review. Arquivos Brasileiros de Cardiologia, 121(12), Article e20240294. https://doi.org/10.36660/abc.20240294
Snoep, M. C., Aliasi, M., van der Meeren, L. E., Jongbloed, M. R. M., DeRuiter, M. C., & Haak, M. C. (2021). Placenta morphology and biomarkers in pregnancies with congenital heart disease: A systematic review. Placenta, 112, 189–196. https://doi.org/10.1016/j.placenta.2021.07.297
Steenbergen, E. V., Hasperhoven, G., van der Louw, E., Dulfer, K., Lebon, A., Verbruggen, S., & Joosten, K. (2025). Pediatric enteral nutrition after hospital discharge: A systematic review and toolbox for clinical practice. Clinical Nutrition, 54, 191–201. https://doi.org/10.1016/j.clnu.2025.09.007
Tahirović, E., Begić, H., Tahirović, H., & Varni, J. W. (2011). Quality of life in children after cardiac surgery for congenital heart disease. Collegium Antropologicum, 35(4), 1285–1290.
Ting, J., Songer, K., Bailey, V., Rotman, C., Lipsitz, S., Rosenberg, A. R., Delgado-Corcoran, C., & Moynihan, K. M. (2025). Impact of subspecialty pediatric palliative care on children with heart disease: A systematic review and meta-analysis. Pediatric Cardiology, 46(5), 1142–1156. https://doi.org/10.1007/s00246-024-03535-4
Trivedi, A., Browning Carmo, K., Jatana, V., James-Nunez, K., & Gordon, A. (2023). Growth and risk of adverse neuro-developmental outcome in infants with congenital heart disease: A systematic review. Acta Paediatrica, 112(1), 53–62. https://doi.org/10.1111/apa.16564
Van Loo, L., Cools, B., Dereymaeker, A., & Jansen, K. (2024). Neuromonitoring modalities predicting neurological impairment in pediatric congenital heart disease: A systematic review. Frontiers in Neurology, 15, Article 1502762. https://doi.org/10.3389/fneur.2024.1502762
Vasilescu, S., Vasilescu, D. I., Dan, A. M., Munteanu, O., Enyedi, M., Slavu, I. M., & Cirstoiu, M. M. (2024). Comprehensive review of the psychosocial impact on parents of newborns with congenital heart disease: A significant problem in low- and middle-income countries. Cureus, 16(9), Article e68532. https://doi.org/10.7759/cureus.68532
Velvin, G., Johansen, H., Østertun-Geirdal, A., & Bathen, T. (2023). Fatigue in patients with syndromic heritable thoracic aortic disease: A systematic review of the literature and a qualitative study of patients' experiences and perceptions. Orphanet Journal of Rare Diseases, 18(1), Article 119. https://doi.org/10.1186/s13023-023-02709-2
Wang, Y., Ma, F., Yang, J., Zhang, Y., Zhou, M., Bai, Y., Elmobasher, M., & Chen, Z. (2025). Health-related quality of life and influencing factors in parents of children with congenital heart disease: A systematic review and meta-analysis. Frontiers in Public Health, 13, Article 1622491. https://doi.org/10.3389/fpubh.2025.1622491
Kaugars, A., Shields, C., & Brosig, C. (2018). Stress and quality of life among parents of children with congenital heart disease referred for psychological services. Congenital Heart Disease, 13(1), 72–78. https://doi.org/10.1111/chd.12547
Downloads
Published
Issue
Section
License
Copyright (c) 2026 Klaudia Jurkowska, Julia Mądrzak, Dominika Dutkiewicz, Olga Endler, Mikołaj Dybicz, Marianna Ciastoń, Magdalena Filuk, Jakub Fidelus, Julia Czerniewska, Marta Handzel
This work is licensed under a Creative Commons Attribution 4.0 International License.
All articles are published in open-access and licensed under a Creative Commons Attribution 4.0 International License (CC BY 4.0). Hence, authors retain copyright to the content of the articles.
CC BY 4.0 License allows content to be copied, adapted, displayed, distributed, re-published or otherwise re-used for any purpose including for adaptation and commercial use provided the content is attributed.
How to Cite
