Elevated risk for developmental disabilities in children with congenital heart defects.
atrial septal defect
birth defects
developmental delay
early intervention
intellectual disability
screening
Journal
Birth defects research
ISSN: 2472-1727
Titre abrégé: Birth Defects Res
Pays: United States
ID NLM: 101701004
Informations de publication
Date de publication:
01 11 2023
01 11 2023
Historique:
revised:
24
08
2023
received:
11
05
2023
accepted:
25
08
2023
medline:
3
11
2023
pubmed:
8
9
2023
entrez:
8
9
2023
Statut:
ppublish
Résumé
This study examined risk for developmental disabilities in preschool-aged children with a congenital heart defect (CHD) at the population level. Statewide birth, birth defects, and preschool developmental disability records were integrated. The final sample included 1,966,585 children (51.0% male). Children were grouped by type(s) of CHD: critical CHD, noncritical CHD, atrial septal defect, or no major birth defects (groups were mutually exclusive). Children with a CHD (any type) were at increased risk for developmental disability (any type) (RR 2.08, 95% CI 2.03-2.14, P < .001). Children in the critical CHD, noncritical CHD, and atrial septal defect groups were at increased risk for developmental delay, intellectual disability, language impairment, other health impairment, and any disability. Children in the atrial septal defect group were at increased risk for autism spectrum disorder and speech impairment. For all CHD groups, risk was greatest for other health impairment and intellectual disability. Increased risk for developmental disabilities was identified for children with less severe CHDs as well as for children with more severe (critical) CHDs. All children with CHDs should be closely monitored so that appropriate interventions can be initiated as early as possible to maximize learning outcomes.
Sections du résumé
BACKGROUND
This study examined risk for developmental disabilities in preschool-aged children with a congenital heart defect (CHD) at the population level.
METHODS
Statewide birth, birth defects, and preschool developmental disability records were integrated. The final sample included 1,966,585 children (51.0% male). Children were grouped by type(s) of CHD: critical CHD, noncritical CHD, atrial septal defect, or no major birth defects (groups were mutually exclusive).
RESULTS
Children with a CHD (any type) were at increased risk for developmental disability (any type) (RR 2.08, 95% CI 2.03-2.14, P < .001). Children in the critical CHD, noncritical CHD, and atrial septal defect groups were at increased risk for developmental delay, intellectual disability, language impairment, other health impairment, and any disability. Children in the atrial septal defect group were at increased risk for autism spectrum disorder and speech impairment. For all CHD groups, risk was greatest for other health impairment and intellectual disability.
CONCLUSIONS
Increased risk for developmental disabilities was identified for children with less severe CHDs as well as for children with more severe (critical) CHDs. All children with CHDs should be closely monitored so that appropriate interventions can be initiated as early as possible to maximize learning outcomes.
Types de publication
Journal Article
Research Support, U.S. Gov't, P.H.S.
Langues
eng
Sous-ensembles de citation
IM
Pagination
1708-1722Subventions
Organisme : CDC HHS
ID : 6NUE1EH001349
Pays : United States
Informations de copyright
© 2023 The Authors. Birth Defects Research published by Wiley Periodicals LLC.
Références
Barger, B., Rice, C., Wolf, R., & Roach, A. (2018). Better together: Developmental screening and monitoring best identify children who need early intervention. Disability Health Journal, 11(3), 420-426.
Barros, A. J., & Hirakata, V. N. (2003). Alternatives for logistic regression in cross-sectional studies: An empirical comparison of models that directly estimate the prevalence ratio. BMC Medical Research Methodology, 3(1), 21.
Batra, A. S., Alexander, M. E., & Silka, M. J. (2012). Attention-deficit/hyperactivity disorder, stimulant therapy, and the patient with congenital heart disease: Evidence and reason. Pediatric Cardiology, 33(3), 394-401.
Bolduc, M. E., Rennick, J. E., Gagnon, I., Majnemer, A., & Brossard-Racine, M. (2022). Canadian developmental follow-up practices in children with congenital heart defects: A national environmental scan. CJC Pediatric and Congenital Heart Disease, 1, 3-10.
Brandlistuen, R. E., Stene-Larsen, K., Holmstron, H., Landolt, M. A., Eskedal, L. T., & Vollrath, M. E. (2011). Occurrence and predictors of developmental impairments in 3-year-old children with congenital heart defects. Journal of Developmental and Behavioral Pediatrics, 32(7), 526-532.
Brosig, C. L., Bear, L., Allen, S., Hoffmann, R. G., Pan, A., Frommelt, M., & Mussatto, K. A. (2017). Preschool neurodevelopmental outcomes in children with congenital heart disease. Journal of Pediatrics, 183, 80-86.
Cioni, G., Inguaggiato, E., & Sgandurra, G. (2016). Early intervention in neurodevelopmental disorders: Underlying neural mechanisms. Developmental Medicine & Child Neurology, 58(Suppl 4), 61-66.
Cohen, W. W., Ravikumar, P., & Fienberg, S. E. (2003). A comparison of string distance metrics for name-matching tasks. KDD Workshop on Data Cleaning and Object Consolidation, 3, 73-78. Retrieved October 25, 2022 from. https://www.cs.cmu.edu/~wcohen/postscript/kdd-2003-match-ws.pdf
Committee on Children With Disabilities. (2001). Developmental surveillance and screening of infants and young children. Pediatrics, 108(1), 192-195.
De Bruin, J. (2019). Python Record Linkage Toolkit: A toolkit for record linkage and duplicate detection in Python (Version v0.14). Zenodo. Retrieved October 25, 2022 from. https://doi.org/10.5281/zenodo.3559043
DeMaso, D. R., Calderon, J., Taylor, G. A., Holland, J. E., Stopp, C., White, M. T., Bellinger, D. C., Rivkin, M. J., Wypij, D., & Newburger, J. W. (2017). Psychiatric disorders in adolescents with single ventricle congenital heart disease. Pediatrics, 139, e20162241. https://doi.org/10.1542/peds.2016-2241
Donofrio, M. T., & Massaro, A. N. (2010). Impact of congenital heart disease on brain development and neurodevelopmental outcome. International Journal of Pediatrics, 2010, 359390. https://doi.org/10.1155/2010/359390
Feldmann, M., Bataillard, C., Ehrler, M., Ullrich, C., Knirsch, W., Gosteli-Peter, M. A., Held, U., & Latal, B. (2021). Cognitive and executive function in congenital heart disease: A meta-analysis. Pediatrics, 148(4), e2021050875. https://doi.org/10.1542/peds.2021-050875
Florida Department of Education. (2014). Florida Statutes and State Board of Education Rules, Excerpts for special programs (Volume 1_B). Retrieved October 25, 2022 from http://www.fldoe.org/core/fileparse.php/7687/urlt/0068968-1b-stats.pdf
Florida Department of Education. (2021). Bureau of Exceptional Education and Student Services, Children's Registry and Information System. Retrieved April, 20, 2023 from http://www.chris.miami.edu/
Florida Department of Health. (2021a). Bureau of Vital Statistics, Birth Certificate Records. Retrieved April 20, 2023, from https://www.floridahealth.gov/certificates/certificates/birth/index.html
Florida Department of Health. (2021b). Florida Birth Defects Registry. Retrieved April, 20, 2023 from https://www.floridahealth.gov/diseases-and-conditions/birth-defects/data-reports.html
Fourdain, S., St-Denis, A., Harvey, J., Birca, A., Carmant, L., Gallagher, A., Trudeau, N., & CINC Team. (2019). Language development in children with congenital heart disease aged 12-24 months. European Journal of Paediatric Neurology, 23(3), 491-499.
Green, A. (2004). Outcomes of congenital heart disease: A review. Journal of Pediatric Nursing, 30(4), 280-284.
Guralnick, M. J. (1997). The effectiveness of early intervention. Paul H. Brookes Publishing Co.
Hartman, R. J., Rasmussen, S. A., Botto, L. D., Riehle-Colarusso, T., Martin, C. L., Cragan, J. D., Shin, M., & Correa, A. (2011). The contribution of chromosomal abnormalities to congenital heart defects: A population-based study. Pediatric Cardiology, 32(8), 1147-1157.
Khalil, A., Suff, N., Thilaganathan, B., Hurrell, A., Cooper, D., & Carvalho, J. S. (2014). Brain abnormalities and neurodevelopmental delay in congenital heart disease: Systematic review and meta-analysis. Ultrasound in Obstetrics & Gynecology, 43, 14-24.
Kheiwa, A., Hari, P., Madabhushi, P., & Varadarajan, P. (2020). Patent foramen ovale and atrial septal defect. Echocardiography, 37(12), 2172-2184.
Kirby, R. S. (2002). Co-occurrence of developmental disabilities with birth defects. Mental Retardation and Developmental Disabilities, 8, 182-187.
Kirby, R. S., Brewster, M. A., Canino, C. U., & Pavin, M. (1995). Early childhood surveillance of developmental disorders by a birth defects surveillance system: Methods, prevalence comparisons, and mortality patterns. Journal of Developmental & Behavioral Pediatrics, 16, 318-326.
Latal, B. (2016). Neurodevelopmental outcomes of the child with congenital heart disease. Clinics in Perinatology, 43, 173-185.
Lipkin, P. H., & Macias, M. M. (2019, December 16). AAP report supports universal developmental screening, expanded surveillance, referrals. https://publications.aap.org/aapnews/news/7042
Mahle, W. T., & Wernovsky, G. (2001). Long-term developmental outcome of children with complex congenital heart disease. Clinics in Perinatology, 28, 235-247.
Mai, C. T., Isenburg, J. L., Canfield, M. A., Meyer, R. E., Correa, A., Alverson, C. J., Lupo, P. J., Riehle-Colarusso, T., Ja Cho, S., Aggarwal, D., Kirby, R. S., & National Birth Defects Prevention Network. (2019). National population-based estimates for major birth defects 2010-2014. Birth Defects Research, 111, 1420-1435.
Majnemer, A., Limperopoulos, C., Shevell, M. I., Rohlicek, C., Rosenblatt, B., & Tchervenkov, C. (2009). A new look at outcomes of infants with congenital heart disease. Pediatric Neurology, 40(3), 197-204.
Marino, B. S., Lipkin, P. H., Newburger, J. W., Peacock, G., Gerdes, M., Gaynor, W., Mussatto, K. A., Uzark, K., Godlberg, C. S., Johnson, W. H., Jr., Li, J., Smith, S. E., Bellinger, D. C., & Mahle, W. T. (2012). Neurodevelopmental outcomes in children with congenital heart disease: Evaluation and management: A scientific statement from the American Heart Association. Circulation, 126(9), 1143-1172.
Miclea, D., Peca, L., Cuzmici, Z., & Pop, I. V. (2015). Genetic testing in patients with global developmental delay / intellectual disabilities. A review. Clujul Medical Journal, 88(3), 288-292.
Miller, D. T., Adam, M. P., Aradhya, S., Biesecker, L. G., Brothman, A. R., Carter, N. P., Church, D. M., Crolla, J. A., Eichler, E. E., Epstein, C. J., Faucett, W. A., Feuk, L., Friedman, J. M., Hamosh, A., Jackson, L., Kaminsky, E. B., Kok, K., Krantz, I. D., Kuhn, R. M., … Ledbetter, D. H. (2010). Consensus statement: Chromosomal microarray is a first-tier clinical diagnostic test for individuals with developmental disabilities or congenital anomalies. American Journal of Human Genetics, 86(5), 749-764. https://doi.org/10.1016/j.ajhg.2010.04.006
National Birth Defects Prevention Network. (2021). Birth defects surveillance guidelines. Retrieved on October 25, 2022 from https://www.nbdpn.org/guidelines.php
Oster, M. E., Watkins, S., Hill, K. D., Knight, J. H., & Meyer, R. E. (2017). Academic outcomes in children with congenital heart defects. A population-based cohort study. Circulation: Cardiovascular Quality and Outcomes, 10(2), 1-6.
Pierpont, M. E., Basson, C. T., Benson, D. W., Jr., Gelb, B. D., Giglia, T. M., Goldmuntz, E., McGhee, G., Sable, C. A., Srivastava, D., & Webb, C. L. (2007). Genetic basis for congenital heart defects: Current knowledge: A scientific statement from the American Heart Association congenital cardiac defects committee, council on cardiovascular disease in the young: Endorsed by the American Academy of Pediatrics. Circulation, 115, 3015-3038.
Razzaghi, H., Oster, M., & Reefhuis, J. (2015). Long-term outcomes in children with congenital heart disease: National Health Interview Survey. Journal of Pediatrics, 166, 119-124.
Riehle-Colarusso, T., Autry, A., Razzaghi, H., Boyle, C. A., Mahle, W. T., Van Naarden, B. K., & Correa, A. (2015). Congenital heart defects and receipt of special education services. Pediatrics, 146(3), 496-504.
Salemi, J. L., Rutkowski, R., Tanner, J. P., Matas, J. L., & Kirby, R. S. (2018). Identifying algorithms to improve the accuracy of unverified birth defects diagnosis codes. Public Health Reports, 133(3), 303-310.
Salemi, J. L., Tanner, J. P., Anjohrin, S. B., Rutowski, R. E., Correia, J. A., Watkins, S. M., & Kirby, R. S. (2015). Evaluating difficult decisions in public health surveillance: Striking the right balance between timeliness and completeness. Journal of Registry Management, 42(2), 48-61.
Salemi, J. L., Tanner, J. P., Bailey, M., Mbah, A. K., & Salihu, H. M. (2013). Creation and evaluation of a multi-layered maternal and child health database for comparative effectiveness research. Journal of Registry Management, 40, 14-28.
Salemi, J. L., Tanner, J. P., Kennedy, S., Block, S., Bailey, M., Correia, J. A., Watkins, S. M., & Kirby, R. S. (2012). A comparison of two surveillance strategies for selected birth defects in Florida. Public Health Reports, 127(4), 391-400.
Salemi, J. L., Tanner, J. P., Sampat, D., Anjohrin, S. B., Correia, J. A., Watkins, S. M., & Kirby, R. S. (2015). The accuracy of hospital discharge diagnosis codes for major birth defects: Evaluation of a statewide registry with passive case ascertainment. Journal of Public Health Management and Practice, 22(3), E9-E19.
Sanz, J., Berl, M. M., Armour, A. C., Wang, J., Cheng, Y. I., & Donofrio, M. T. (2016). Prevalence and pattern of executive dysfunction in school age children with congenital heart disease. Congenital Heart Disease, 12(2), 202-209.
Sigmon, E. R., Kelleman, M., Susi, A., Nylund, C. M., & Oster, M. E. (2019). Congenital heart disease and autism: A case-control study. Pediatrics, 144(5), e20184114.
Soto, C. B., Olude, O., Hoffmann, R. G., Bear, L., Chin, A., Dasgupta, M. S., & Mussatto, K. (2011). Implementation of a routine developmental follow-up program for children with congenital heart disease: Early results. Congenital Heart Disease, 6, 451-460.
US Department of Health and Human Services, Office for Civil Rights. (2012, November 26). Guidance regarding methods for de-identification of protected health information in accordance with the Health Insurance Portability and Accountability Act (HIPAA) privacy rule. https://www.hhs.gov/sites/default/files/ocr/privacy/hipaa/understanding/coveredentities/De-identification/hhs_deid_guidance.pdf
Wang, Y., Liu, G., Canfield, M. A., Mai, C. T., Gilboa, S. M., Meyer, R. E., Anderka, M., Copeland, G. E., Kucik, J. E., Nembhard, W. N., & Kirby, R. S. (2015). National Birth Defects Prevention Network. Racial/ethnic differences in survival of United States children with birth defects: A population-based study. The Journal of Pediatrics, 166(4), 819-826.e2.
Ware, J., Butcher, J. L., Latal, B., Sadhwani, A., Rollins, C. K., Brosig Soto, C. L., Butler, S. C., Eiler-Sims, P. B., Ullman Shade, C. V., & Wernovsky, G. (2020). Neurodevelopmental evaluation strategies for children with congenital heart disease aged birth through 5 years: Recommendations from the cardiac neurodevelopmental outcome collaborative. Cardiology in the Young, 30, 1609-1622.
Wernovsky, G., & Licht, D. J. (2016). Neurodevelopmental outcomes in children with congenital heart disease - What can we impact? Pediatric Critical Care Medicine, 17(8), S232-S242.