Access to transplantation for persons with intellectual disability: Strategies for nondiscrimination
| Autor: | Paulo N. Martins, Mahwish U. Ahmad, Aaron Wightman, William L. Freeman, Robert M. Veatch, Ashton Chen, Stephanie Little, Keren Ladin, Andrew Flescher |
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| Rok vydání: | 2019 |
| Předmět: |
medicine.medical_specialty
Referral Persons with Mental Disabilities Stigma (botany) Eligibility Determination 030230 surgery 03 medical and health sciences 0302 clinical medicine Intellectual Disability Intellectual disability medicine Immunology and Allergy Humans Pharmacology (medical) Contraindication Transplantation business.industry Legislature Organ Transplantation medicine.disease Gatekeeping Family medicine Candidacy Quality of Life business |
| Zdroj: | American journal of transplantation : official journal of the American Society of Transplantation and the American Society of Transplant SurgeonsREFERENCES. 20(8) |
| ISSN: | 1600-6143 |
| Popis: | Disqualifying patients with intellectual disabilities (ID) from transplantation has received growing attention from the media, state legislatures, the Office of Civil Rights, and recently the National Council on Disability, as well as internationally. Compared with evidence-based criteria used to determine transplant eligibility, the ID criterion remains controversial because of its potential to be discriminatory, subjective, and because its relationship to outcomes is uncertain. Use of ID in determining transplant candidacy may stem partly from perceived worse adherence and outcomes for patients with ID, fear of penalties to transplant centers for poor outcomes, and stigma surrounding the quality of life for people with ID. However, using ID as a contraindication to solid organ transplantation is not evidence-based and reduces equitable access to transplantation, disadvantaging an already vulnerable population. Variability and lack of transparency in referral and evaluation allows for gatekeeping, threatens patient autonomy, limits access to lifesaving treatment, and may be seen as unfair. We examine the benefits and harms of using ID as a transplant eligibility criterion, review current clinical evidence and ethical considerations, and make recommendations for transplant teams and regulatory agencies to ensure fair access to transplant for individuals with ID. |
| Databáze: | OpenAIRE |
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