Consideration of children with intellectual disability as candidates for solid organ transplantation—A practice in evolution

Wightman, Aaron; Diekema, Douglas S.; Goldberg, Aviva

doi:10.1111/petr.13091

Cited by 16 publications

(24 citation statements)

References 34 publications

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“…As we reviewed in a previous publication, this argument is not supported empirically by the available data . While selection bias remains a concern, the limited data available show good outcomes for pediatric transplant recipients with ID at least comparable to their intellectually normal peers . Further, none of the available data suggest notable differences in early graft survival, patient survival, adherence, quality of life, or improvement in functional status between recipients with and without ID .…”

Section: Should Children With Severe Id Should Be Excluded As Candidamentioning

confidence: 92%

“…It is important to note that the existing outcomes data as presented earlier do not support the assertion of greater benefit following transplant for children without ID . In addition, when considering use of QoL assessments to justify a policy of exclusion, one must consider the limitations of such assessments.…”

Section: Should Children With Severe Id Should Be Excluded As Candidamentioning

confidence: 92%

Section: Should Children With Severe Id Should Be Excluded As Candidamentioning

confidence: 93%

“…While selection bias remains a concern, the limited data available show good outcomes for pediatric transplant recipients with ID at least comparable to their intellectually normal peers . Further, none of the available data suggest notable differences in early graft survival, patient survival, adherence, quality of life, or improvement in functional status between recipients with and without ID . As a result, an exclusion of this population on the basis of expected poorer survival raises concerns about fairness.…”

Section: Should Children With Severe Id Should Be Excluded As Candidamentioning

confidence: 99%

“…Increasingly national and international policies have shifted toward inclusion of children with intellectual disabilities (ID); nevertheless, the issue remains contentious and exclusion may still occur at the levels of referral and the selection committee of individual transplant centers . Three arguments historically have been used to justify the exclusion of this population:(1) a belief children with severe ID would have poorer graft and patient survival, (2) a concern over the long‐term future of solid organ transplant recipients with severe ID, and (3) a concern that other, intellectually intact children, would suffer as a result of inclusion of children with ID.…”

Section: Introductionmentioning

confidence: 99%

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Fairness, severe intellectual disability, and the special case of transplantation

Wightman

Goldberg

Diekema

2018

Pediatric Transplantation

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Children with severe intellectual disability have historically been excluded from solid organ transplantation. The purpose of this article was to review the arguments for excluding this population, including claims of poorer recipient and graft survival, a lower QoL as pediatric recipients become adults, and poorer outcomes for other, more deserving pediatric transplant candidates, and make the case that these arguments are no longer persuasive. We will argue that pediatric transplant centers for reasons of social justice, value of relationships, power differential, and fairness should generally not consider intellectual ability or disability as a criterion when making decisions regarding organ transplant eligibility.

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Section: Should Children With Severe Id Should Be Excluded As Candidamentioning

confidence: 92%

Section: Should Children With Severe Id Should Be Excluded As Candidamentioning

confidence: 92%

Section: Should Children With Severe Id Should Be Excluded As Candidamentioning

confidence: 93%

Section: Should Children With Severe Id Should Be Excluded As Candidamentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 3 more Smart Citations

Fairness, severe intellectual disability, and the special case of transplantation

Wightman

Goldberg

Diekema

2018

Pediatric Transplantation

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Comparing Kidney Transplant Rates and Outcomes Among Adults With and Without Intellectual and Developmental Disabilities

et al. 2023

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ImportanceImproving equity in organ transplant access for people with intellectual and developmental disabilities (IDD) is a topic of social discourse in mainstream media, state legislation, and national legislation. However, few studies have compared evaluation rates, transplant rates, and outcomes among adults with and without IDD.ObjectiveTo compare rates of kidney transplant and transplant-specific outcomes between propensity–score matched groups of adults with end-stage kidney disease (ESKD [also referred to as end-stage renal disease (ESRD)]) with and without co-occurring IDD.Design, Setting, and ParticipantsThis retrospective cohort study included all Medicare inpatient and outpatient standard analytical files from 2013 through 2020. A total of 1 413 655 adult Medicare beneficiaries with ESKD were identified. Propensity–score matching was used to balance cohorts based on age, sex, race, follow-up duration, and Charlson Comorbidity Index. The matched cohorts consisted of 21 384 adults with ESKD (10 692 of whom had IDD) and 1258 kidney transplant recipients (629 of whom had IDD). Data were analyzed between June 1, 2022, and August 1, 2022.ExposureIDD.Main Outcomes and MeasuresEvaluation for kidney transplant, receipt of kidney transplant, perioperative complications, readmission, mortality, graft rejection, and graft failure.ResultsOf the 21 384 propensity–score matched adults with ESKD, the median (IQR) age was 55 (43-65) years, 39.2% were male, 27.4% were Black, 64.1% were White, and 8.5% identified as another race or ethnicity. After propensity score matching within the ESKD cohort, 633 patients with IDD (5.9%) received a kidney transplant compared with 1367 of adults without IDD (12.8%). Adults with IDD were 54% less likely than matched peers without IDD to be evaluated for transplant (odds ratio, 0.46; 95% CI, 0.43-0.50) and 62% less likely to receive a kidney transplant (odds ratio, 0.38; 95% CI, 0.34-0.42). Among matched cohorts of kidney transplant recipients, rates of perioperative complications, readmission, and graft failure were similar for adults with and without IDD.Conclusions and RelevanceUsing the largest cohort of adult kidney transplant recipients with IDD to date, the study team found that rates of evaluation and transplant were lower despite yielding equivalent outcomes. These data support consideration of adults with IDD for kidney transplant and underscore the urgent need for antidiscrimination initiatives to promote the receipt of equitable care for this population.

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Ethical Challenges in Pediatric Kidney Transplantation

Johnston

Goldberg

2021

Challenges in Pediatric Kidney Transplantation

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Consideration of children with intellectual disability as candidates for solid organ transplantation—A practice in evolution

Cited by 16 publications

References 34 publications

Fairness, severe intellectual disability, and the special case of transplantation

Fairness, severe intellectual disability, and the special case of transplantation

Comparing Kidney Transplant Rates and Outcomes Among Adults With and Without Intellectual and Developmental Disabilities

Ethical Challenges in Pediatric Kidney Transplantation

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