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Need for Evolving Quality of Life with Congenital Heart Disease: Lifespan Perspectives

Rajathi Sakthivel, Ramalakshmi null, Sriram DK

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International Journal of Pediatric Nursing 10(3):p 119-124, September - December 2024. | DOI: https://doi.org/1021088/ijpen.2454.9126.10324.4

How Cite This Article:

Ramalakshmi, Rajathi Sakthivel, Sriram DK, Need for Evolving Quality of Life with Congenital Heart Disease: Lifespan Perspectives. Int J Pediatr Nurs. 2024;10(3):119-124.

Timeline

Received : November 22, 2024         Accepted : December 07, 2024          Published : December 30, 2024

Abstract

Congenital heart disease (CHD) can be defined as a group of structural cardiac disorders that occur during the fatal period. The incidence rate of CHD is about 8 to 9 per 1000 live neonates, out of which, 25% are considered severe, even with improvements in modern therapeutic options. Children with CHD are still suffering from many long-term issues that include reduced average longevity, high chances of heart failure, and increased risk for physical, neurodevelopmental, and psychiatric health complications. Still, CHD’s concerns for depressive states, anxiety, and neurological disabling conditions in children tend to lower their quality of life. This article emphasizes the factors decline and strategies to enhance the Quality of life (QOL) of children afflicted with CHD which include surgical management, family environment, parent’s health status, and follow-up guidelines


References

  • 1.   Liu, Y., Chen, S., Zühlke, L., Black, G. C., Choy, M. K., Li, N., & Keavney, B. D. (2019). Global birth prevalence of congenital heart defects 1970–2017: Updated systematic review and meta-analysis of 260 studies. International Journal of Epidemiology, 48(2), 455-463. https://doi.org/10.1093/ije/dyz009
  • 2.   Ossa Galvis MM, Bhakta RT, Tarmahomed A, et al. Cyanotic Heart Disease. Updated 2023 Jun 26. In: StatPearls Internet. Treasure Island (FL): StatPearls Publishing; 2024 Jan-. Available from: https://www.ncbi.nlm.nih.gov/books/ NBK500001https://www.ncbi.nlm.nih.gov/ books/NBK500001/
  • 3.   National Institute for health and Care research accessed on 27/11/2024https://evidence.nihr. ac.uk/alert/personalised-risk-assessments-couldreassure-parents-of-children-with-a-de-novomutation/
  • 4.   Bhatt, A. B., Foster, E., Kuehl, K., Alpert, J., et al., (2015). Congenital heart disease in the older adult: A scientific statement from the American Heart Association. Circulation,131(21), 1884-1931. https://doi.org/10.1161/CIR.0000000000000204
  • 5.   Marelli, A. J., Ionescu-Ittu, R., Mackie, A. S., Guo, L., Dendukuri, N., & Kaouache, M. (2014). Lifetime prevalence of congenital heart disease in the general population from 2000 to 2010. Circulation, 30(9), 749-756. https://doi.org/10.1161/ Circulationaha.113.008396
  • 6.   Reller, M. D., Strickland, M. J., Riehle-Colarusso, T., Mahle, W. T., & Correa, A. (2008). Prevalence of congenital heart defects in metropolitan Atlanta, 1998–2005. The Journal of Pediatrics, 153(6), 807- 813. https://doi.org/10.1016/j.jpeds.2008.05.059
  • 7.   National Institutes of Health. Congenital heart defects: living with. Last updated on March 24, 2022. http://www.nhlbi.nih.gov/health/congenitalheart-defects/living-with
  • 8.   Rhee, E. K., Evangelista, J. K., & Nigrin, D. J. (2000). Impact of congenital heart disease on growth in the first year of life. Archives of Disease in Childhood, 82(1), 90–95.
  • 9.   Geva, T. (2006). Magnetic resonance imaging: A unique and versatile imaging tool in congenital heart disease. Circulation, 114(4), 1644–1656.
  • 10.   Moalla, W., Gauthier, R., Maingourd, Y., & Ahmaidi, S. (2005). Six-minute walk test as an index of functional exercise capacity in children with congenital heart disease. International Journal of Cardiology, 98(2), 219–224.
  • 11.   Buys, R., Cornelissen, V., & Vanhees, L. (2012). Exercise training improves physical fitness in patients with congenital heart disease: A systematic review. European Journal of Preventive Cardiology, 19(5), 767–775.
  • 12.   Uzark, K., & Zahka, K. (2013). Comprehensive care for patients with congenital heart disease. Progress in Pediatric Cardiology, 35(2), 33–38.
  • 13.   Medoff-Cooper, B., & Ravishankar, C. (2013). Nutrition and growth in congenital heart disease: A challenge in children. Current Opinion in Cardiology, 28(2), 122–129.
  • 14.   Cohen, M. S., & Marino, B. S. (2011). Follow-up care for congenital heart disease: Managing the longterm needs of children and adults. Journal of the American College of Cardiology, 58(17), 1781–1791.
  • 15.   Smith, B., et al., (2020)Neurodevelopmental Impacts of Early Cardiac Surgery in Children with CHD. Pediatric Neurology, 69(2), 119–125.
  • 16.   Williams, C., et al., (2020)Neurodevelopmental and Cognitive Outcomes in Infants with Congenital Heart Disease: The Role of Surgery. Journal of Pediatric Surgery, 55(4), 586–592.
  • 17.   Wechsler, D. (2012). Wechsler Preschool and Primary Scale of Intelligence (4th ed.). Pearson.
  • 18.   Mahle, W. T., et al. (2018). Developmental screening, surveillance, and evaluation of children with CHD: Recommendations from the American Heart Association. Pediatrics, 141(1), e20172860.
  • 19.   Gioia, G. A., Isquith, P. K., Guy, S. C., & Kenworthy, L. (2000). Behavior Rating Inventory of Executive Function (BRIEF). Psychological ssessment Resources, Inc.
  • 20.   Beca, J., Gunn, J. K., Coleman, L., et al. (2013). New white matter brain injury after infant heart surgery is associated with diagnostic grouping and the use of circulatory arrest. Circulation, 127(9), 971–979.
  • 21.   Jones, A. B., & Smith, C. D. (2021). The impact of early interventions on motor and language development in children with developmental delays. Journal of Pediatric Therapy, 28(3), 215-226.
  • 22.   U.S. Department of Education. (2017). “A Guide to the Individualized Education Program.” U.S. Department of Education. https://www2.ed.gov/ parents/needs/speced/iepguide/index.html.
  • 23.   Hoh, K., & Shih, J. H. (2019). “Cognitive Behavioral Therapy for Pediatric Populations: A Review of Techniques and Efficacy.” Journal of Pediatric Psychology, 44(5), 522–530. https://doi. org/10.1093/jpepsy/jsz003.
  • 24.   McMahon, C. A., & Muir, K. (2014). “Parenting Programs for Children with Developmental Disabilities: An Overview of the Evidence Base.” Australian & New Zealand Journal of Psychiatry, 48(9), 785–793. https://doi. org/10.1177/0004867414533770.
  • 25.   Samaan, Z., & Gauthier, P. (2018). “Neurodevelopmental Follow-up in Children with Congenital Heart Disease.” Canadian Journal of Cardiology, 34(9), 1300–1307. https://doi. org/10.1016/j.cjca.2018.04.022.
  • 26.   Bahr, T., & Kasper, D. (2015). “The Use of Developmental Milestones and Growth Charts in Pediatric Healthcare.” Pediatric Clinics of North America, 62(5), 1115–1133. https://doi. org/10.1016/j.pcl.2015.06.008.
  • 27.   Dempsey, I., & Keen, D. (2017). “Parent and Teacher Collaboration for Children with Developmental Disabilities.” Journal of Intellectual & Developmental Disability, 42(2), 179–191. https:// doi.org/10.3109/13668250.2016.1184354.
  • 28.   Adams, R., et al., (2019)Psychosocial Functioning and Behavioral Health in Children with CHD: An Overview. Journal of Pediatric Psychology, 44(5), 465–474.
  • 29.   Bell, M., et al., (2022)The Influence of Congenital Heart Disease on Emotional and Behavioral Outcomes in Children. Pediatrics, 150(1), e2021053640.
  • 30.   innunen, P. M., & Heikkilä, M. A. (2015). “Psychological Outcomes in Children and Adolescents with Congenital Heart Disease: A Review of the Literature.” European Journal of Pediatrics, 174(9), 1123-1130. https://doi. org/10.1007/s00431-015-2571-7.
  • 31.   Kroenke, K., Spitzer, R. L., & Williams, J. B. (2001). “The PHQ-9: Validity of a Brief Depression Severity Measure.” Journal of General Internal Medicine, 16(9), 606–613. https://doi.org/10.1046/j.1525- 1497.2001.016009606.x.
  • 32.   Zigmond, A. S., & Snaith, R. P. (1983). “The Hospital Anxiety and Depression Scale.” Acta Psychiatrica Scandinavica, 67(6), 361–370. https:// doi.org/10.1111/j.1600-0447.1983.tb09716.x.
  • 33.   Cohen, S., Kamarck, T., & Mermelstein, R. (1983). “A Global Measure of Perceived Stress.” Journal of Health and Social Behavior, 24(4), 385–396. https:// doi.org/10.2307/2136404.
  • 34.   Cuijpers, P., van Straten, A., Andersson, G., & van Oppen, P. (2009). “Psychotherapy for Depression in Adults: A Meta-Analysis of Comparative Outcome Studies.” Journal of Affective Disorders, 103(1-3), 5–16. https://doi.org/10.1016/j.jad.2007.11.007.
  • 35.   Hassan, R. A., & Freeman, M. L. (2017). “Antidepressant Therapy in Patients with Cardiovascular Disease: The Challenge of Balancing Efficacy and Safety.” Journal of Clinical Psychiatry, 78(9), e1240–e1248. https://doi.org/10.4088/ JCP.16r10924.
  • 36.   Kokkinos, P. (2012). “Physical Activity, Health Benefits, and Mortality Risk.” Cardiology Clinics, 30(3), 367-380. https://doi.org/10.1016/j. ccl.2012.03.002.
  • 37.   Thompson, D., et al., (2021) The Cumulative Burden of Morbidity and Quality of Life in Children with Congenital Heart Disease. Pediatric Quality of Life Journal, 40(2), 201–210.
  • 38.   Ware, J. E., & Sherbourne, C. D. (1992). “The MOS 36-Item Short-Form Health Survey (SF-36): I. Conceptual Framework and Item Selection.” Medical Care, 30(6), 473-483. https://doi. org/10.1097/00005650-199206000-00002.
  • 39.   Lee, T., et al., (2018). Long-Term Impact of Congenital Heart Disease on Overall Quality of Life in Children. Journal of Pediatric Health Care, 32(6), 505–513.
  • 40.   Blum, L. W., & Hsia, T. Y. (2015). “Surgical Repair of Congenital Heart Disease: Advances and LongTerm Outcomes.” Seminars in Thoracic and Cardiovascular Surgery, 27(4), 243–251. https:// doi.org/10.1053/j.semtcvs.2015.06.008.
  • 41.   Kober, L., & Torp-Pedersen, C. (2000). “ACE Inhibitors and Beta-Blockers in the Long-Term Management of Congenital Heart Disease and Heart Failure.” European Heart Journal, 21(2), 89– 96. https://doi.org/10.1053/euhj.2000.1847.

Data Sharing Statement

There are no additional data available. All raw data and code are available upon request.

Funding

This research received no funding.

Author Contributions

All authors contributed significantly to the work and approve its publication.

Ethics Declaration

This article does not involve any human or animal subjects, and therefore does not require ethics approval.

Acknowledgements

We would like to express our gratitude to the patients, their families, and all those who have contributed to this study.

Conflicts of Interest

No conflicts of interest in this work.


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Cite this article

Ramalakshmi, Rajathi Sakthivel, Sriram DK, Need for Evolving Quality of Life with Congenital Heart Disease: Lifespan Perspectives. Int J Pediatr Nurs. 2024;10(3):119-124.


Licence:

Attribution-Non-commercial 4.0 International (CC BY-NC 4.0)

This license enables reusers to distribute, remix, adapt, and build upon the material in any medium or format for noncommercial purposes only, and only so long as attribution is given to the creator.


Received Accepted Published
November 22, 2024 December 07, 2024 December 30, 2024

DOI: https://doi.org/1021088/ijpen.2454.9126.10324.4

Keywords

Congenital heart diseaseQuality of lifeTherapeutic managementFactors and strategies

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Received November 22, 2024
Accepted December 07, 2024
Published December 30, 2024

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Attribution-Non-commercial 4.0 International (CC BY-NC 4.0)

This license enables reusers to distribute, remix, adapt, and build upon the material in any medium or format for noncommercial purposes only, and only so long as attribution is given to the creator.


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