Organ Transplantation for Individuals with Neurodevelopmental Disorders. Academic Article uri icon

Overview

abstract

  • In 1996, Sandra Jensen became the first person with Down syndrome to receive a heart-lung transplant. Although it took place almost 20 years ago, her experience continues to shed light on contemporary challenges that individuals with neurodevelopmental disorders face in securing access to transplantation. While overt discrimination has decreased, barriers persist in physician referrals, center-specific decisionmaking regarding wait-listing, and the provision of accommodations for optimizing the assessment and medical management of these individuals. These issues arise from the persistent biases and assumptions of individuals as well as those of a healthcare system that is inadequately positioned to optimally serve the medical needs of the growing number of individuals with functional impairments. More data and greater transparency are needed to understand the nature and extent of ongoing access problems; however, long-term solutions will require changes at the healthcare professional, regional transplant center, and national levels.

publication date

  • April 1, 2016

Research

keywords

  • Decision Making
  • Delivery of Health Care
  • Neurodevelopmental Disorders
  • Organ Transplantation

Identity

Scopus Document Identifier

  • 84960498786

Digital Object Identifier (DOI)

  • 10.1017/S0963180115000572

PubMed ID

  • 26957452

Additional Document Info

volume

  • 25

issue

  • 2