Temporal trends and regional variation of heart transplantation in children with intellectual and developmental disabilities.
United Network for Organ Sharing
children
developmental disability
intellectual disability
motor disability
Journal
Pediatric transplantation
ISSN: 1399-3046
Titre abrégé: Pediatr Transplant
Pays: Denmark
ID NLM: 9802574
Informations de publication
Date de publication:
Dec 2023
Dec 2023
Historique:
revised:
20
09
2023
received:
24
03
2023
accepted:
25
09
2023
medline:
27
11
2023
pubmed:
16
10
2023
entrez:
16
10
2023
Statut:
ppublish
Résumé
Historically, intellectual and developmental disability (IDD) has been considered an important factor in choosing potential recipients of organ transplants among many transplant centers. This study evaluated the temporal changes at the national and regional levels in the proportion of heart transplantation in children with IDD. Children younger than 19 years in the United Network for Organ Sharing (UNOS) database who received heart transplants from 2010 to 2021 were included in this study. The patients were grouped into only definitive intellectual disability, both definitive intellectual and motor disability, only definitive motor disability, and no developmental disability. Multinomial logistic regressions were used to examine the proportion of heart transplants in each category for the whole cohort and each geographic transplant region. There were 4273 pediatric heart transplant recipients included in the study. From 2010 to 2021, the percentages of pediatric heart transplants increased from 3.8% (95% CI, 0.01-0.05) to 5.8% (95% CI, 0.03-0.08) in children with only definitive intellectual disability (OR 0.07; 95% CI, 0.02-0.1, p There is increasing inclusion of children diagnosed with intellectual and developmental disabilities in heart transplantation. A review of the current allocation policies may address the marked geographic variations found in this study.
Sections du résumé
BACKGROUND
BACKGROUND
Historically, intellectual and developmental disability (IDD) has been considered an important factor in choosing potential recipients of organ transplants among many transplant centers. This study evaluated the temporal changes at the national and regional levels in the proportion of heart transplantation in children with IDD.
METHODS
METHODS
Children younger than 19 years in the United Network for Organ Sharing (UNOS) database who received heart transplants from 2010 to 2021 were included in this study. The patients were grouped into only definitive intellectual disability, both definitive intellectual and motor disability, only definitive motor disability, and no developmental disability. Multinomial logistic regressions were used to examine the proportion of heart transplants in each category for the whole cohort and each geographic transplant region.
RESULTS
RESULTS
There were 4273 pediatric heart transplant recipients included in the study. From 2010 to 2021, the percentages of pediatric heart transplants increased from 3.8% (95% CI, 0.01-0.05) to 5.8% (95% CI, 0.03-0.08) in children with only definitive intellectual disability (OR 0.07; 95% CI, 0.02-0.1, p
CONCLUSION
CONCLUSIONS
There is increasing inclusion of children diagnosed with intellectual and developmental disabilities in heart transplantation. A review of the current allocation policies may address the marked geographic variations found in this study.
Types de publication
Review
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
e14620Informations de copyright
© 2023 Wiley Periodicals LLC.
Références
Statter MB, Noritz G, Committee on Bioethics, Council on Children with Disabilities. Committee on bioethics, children with intellectual and developmental disabilities as organ transplantation recipients. Pediatrics. 2020;145(5):e20200625.
Chen A, Ahmad M, Flescher A, et al. Access to transplantation for persons with intellectual disability: strategies for nondiscrimination. Am J Transplant. 2020;20(8):2009-2016.
Panocchia N, Bossola M, Vivanti G. Transplantation and mental retardation: what is the meaning of a discrimination? Am J Transplant. 2010;10(4):727-730.
Wightman A, Bartlett HL, Zhao Q, Smith JM. Prevalence and outcomes of heart transplantation in children with intellectual disability. Pediatr Transplant. 2017;21(2).
Goel AN, Iyengar A, Schowengerdt K, Fiore AC, Huddleston CB. Heart transplantation in children with intellectual disability: an analysis of the UNOS database. Pediatr Transplant. 2017;21(2).
Wightman A, Goldberg A, Diekema D. Fairness, severe intellectual disability, and the special case of transplantation. Pediatr Transplant. 2018;22(5):e13228.
Austin A, Adam D. Improving heart transplantation by expanding the donor pool. 2021. Accessed March 23, 2023. https://www.acc.org/latest-in-cardiology/articles/2021/06/01/18/33/improving-heart-transplantation-by-expanding-the-donor-pool
Nativi JN, Kfoury AG, Myrick C, et al. Effects of the 2006 U.S. thoracic organ allocation change: analysis of local impact on organ procurement and heart transplantation. J Heart Lung Transplant. 2010;29(3):235-239.
Rodrigues W, Carr M, Ridout D, et al. Total donor ischemic time: relationship to early hemodynamics and intensive care morbidity in pediatric cardiac transplant recipients. Pediatr Crit Care Med. 2011;12(6):660-666.
Tumin D, Horan J, Shrider EA, et al. County socioeconomic characteristics and heart transplant outcomes in the United States. Am Heart J. 2017;190:104-112.
Vranic GM, Ma JZ, Keith DS. The role of minority geographic distribution in waiting time for deceased donor kidney transplantation. Am J Transplant. 2014;14(11):2526-2534.
Mathur AK, Ashby VB, Fuller DS, et al. Variation in access to the liver transplant waiting list in the United States. Transplantation. 2014;98(1):94-99.
Liamlahi R, Latal B. Neurodevelopmental outcome of children with congenital heart disease. Handb Clin Neurol. 2019;162:329-345.
Griffin KJ, Elkin TD, Smith CJ. Academic outcomes in children with congenital heart disease. Clin Pediatr (Phila). 2003;42(5):401-409.
Morton PD, Ishibashi N, Jonas RA. Neurodevelopmental abnormalities and congenital heart disease: insights into altered brain maturation. Circ Res. 2017;120(6):960-977.
Zablotsky B, Black LI, Maenner MJ, et al. Prevalence and trends of developmental disabilities among children in the United States: 2009-2017. Pediatrics. 2019;144(4).
Durkin MS. Increasing prevalence of developmental disabilities among children in the US: a sign of progress? Pediatrics. 2019;144(4).