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Keywords:

  • cognitive;
  • decision-making;
  • medical ethics;
  • neurodevelopmental delay;
  • pediatric transplantation;
  • solid organ transplantation

Abstract:  Children with NDD present for organ transplant evaluation, but the role of NDD as a listing criterion itself is poorly described. Therefore, we sought to investigate how major pediatric solid organ transplant programs use NDD as a criterion in their listing decisions. We developed a survey that was sent via post to active pediatric solid organ transplant programs across the United States investigating transplant listing decision-making for neurodevelopmentally delayed children. Respondents were medical/surgical directors and transplant coordinators. Descriptive statistics summarize the findings. Programs inconsistently use NDD in listing decisions. Thirty-nine percent of programs stated that they “rarely” or “never” consider NDD in their decisions, whereas 43% of programs “always” or “usually” do. Sixty-two percent of programs report that informal processes guide their use of NDD, and no programs describe their process as “formal, explicit, and uniform.” The degree of delay is an additional source of discordance among programs, with 14% of programs reporting mild or moderate NDD as a relative contraindication to listing and 22% reporting that NDD was “irrelevant” to the listing decision. The use of NDD in pediatric solid organ transplant listing decisions is varied and inconsistent across active programs.