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An Analysis of the US Transplant Registry Highlights Disparities that Hinder Timely Waitlisting for Children with End-Stage Kidney Disease

August 5, 2024

Editor’s Note: Dr. Elif Ozdogan (she/her) is a resident physician in Pediatrics at The Boston Combined Residency Program at Boston Children's Hospital and Boston Medical Center. She is interested in quality improvement and computational research and hopes to pursue further training in Transplant Medicine. -Rachel Y. Moon, MD, Associate Editor, Digital Media, Pediatrics

In the US, every year about 1,000 children develop end-stage kidney disease, where the kidneys can no longer sustain adequate function to meet the body’s needs. The best treatment is kidney transplantation, and dialysis can serve as a bridge to this. However, in children, any dialysis exposure before transplantation is associated with worse outcomes, such as poorer cognitive and physical development. Thus, children can be “preemptively” waitlisted prior to dialysis initiation, a practice associated with better outcomes. Once activated on the waitlist, the US kidney allocation system also prioritizes children over adults, all with an effort to minimize dialysis exposure in this vulnerable population.

Being early released this week in Pediatrics, the article entitled “Disparities in Access to Timely Waitlisting Among Pediatric Kidney Transplant Candidates” by Lindsey Maclay, BS, from Columbia University and colleagues from Children’s Hospital of Philadelphia, Dell Medical School, and the University of Colorado, investigated the impact of disparities on timely waitlisting for pediatric kidney transplant recipients prior to dialysis initiation (10.1542/peds.2024-065934). This work builds upon the prior findings that Black and Hispanic children are less likely to receive preemptive transplants, but takes a step back to evaluate the actual listing process.

The first part of the study included 4,506 children aged 3–17 years added to the kidney transplant waitlist in 2015–2019; approximately half were preemptively listed. The second part included 415 candidates in this same time period who started with dialysis as children but were not waitlisted until after their 18th birthday.

The results highlighted the following disparities in timely waitlisting:

  • Children were less likely to be waitlisted preemptively if they had the following social and demographic characteristics: female sex, Black race, Hispanic ethnicity, and/or public insurance.
  • Children who were not preemptively listed ended up with longer dialysis exposure at time of transplant compared to preemptively listed children.
  • Candidates who did not get waitlisted until after their 18th birthday despite being started on dialysis before their 18th birthday (when they would have been eligible for pediatric prioritization) were more likely to have female sex, Hispanic ethnicity, minority race, and public insurance. These patients also had lower rates of transplantation with kidneys of lower quality.

With this study, we are once again reminded of the structural barriers that impede access to equitable healthcare, this time regarding timely access to kidney transplantation. To address these disparities and ensure every child has the opportunity for the best outcome possible, large-scale targeted interventions and policy changes are necessary.

Until then, as pediatricians we can play a vital role in this effort by remaining cognizant of these barriers and advocating for our patients with severe kidney disease to ensure early referral for transplant evaluation. To learn more about the details of the study and the waitlisting process, I highly recommend reading this article.

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