Prevalence and outcomes of renal transplantation in children with intellectual disability

Wightman, Aaron; Young, Bessie A.; Bradford, Miranda C.; Dick, A.; Healey, Patrick J.; McDonald, Ruth A.; Smith, Jodi M.

doi:10.1111/petr.12339

Cited by 40 publications

(37 citation statements)

References 9 publications

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“…Recent controversies have suggested that traditional exclusion criteria may lack a strong ethical support and instead have reflected societal values of certain traits (such as intelligence) (10,17). Furthermore, newer research has demonstrated excellent outcomes in this population, including perceived improvement in quality of life (7,8). Practically, the number of children who could be candidates for dialysis but could not be future candidates for transplantation is very small.…”

Section: Children With Multiple Comorbid Conditionsmentioning

confidence: 99%

“…In contrast, Neu et al, reporting data from the International Pediatric Peritoneal Dialysis Network, demonstrated a higher hospitalization rate and lower 4-year survival rate in patients on peritoneal dialysis with at least one comorbidity (73% versus 90%, respectively) (6). Other studies have suggested renal transplantation is a therapeutic option in this population, with excellent graft survival and reported improvement in quality of life (7,8).…”

Section: Children With Multiple Comorbid Conditionsmentioning

confidence: 99%

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Update on Ethical Issues in Pediatric Dialysis: Has Pediatric Dialysis Become Morally Obligatory?

Wightman

Freeman

2016

CJASN

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Improvements in pediatric dialysis over the past 50 years have made the decision to proceed with dialysis straightforward for the majority of pediatric patients. For certain groups, however, such as children with multiple comorbid conditions, children and families with few social and economic resources, and neonates and infants, the decision of whether to proceed with dialysis remains much more controversial. In this review, we will examine the best available data regarding the outcomes of dialysis in these populations and analyze the important ethical considerations that should guide decisions regarding dialysis for these patients. We conclude that providers must continue to follow a nuanced and individualized approach in decision making for each child and to recognize that, regardless of the decision reached about dialysis, there is a continued duty to care for patients and families to maximize the remaining quality of their lives.

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Section: Children With Multiple Comorbid Conditionsmentioning

confidence: 99%

Section: Children With Multiple Comorbid Conditionsmentioning

confidence: 99%

Update on Ethical Issues in Pediatric Dialysis: Has Pediatric Dialysis Become Morally Obligatory?

Wightman

Freeman

2016

CJASN

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“…We found that for heart, liver, and kidney transplantation, ID was fairly common among recipients using either the narrow (107 [8.9%], 119 [7%], 117 [5.6%]) or broad (285 [24%], 254 [14.7%], 332 [15.9%]) definition of ID . For the available follow‐up time (3‐4 years), we found no difference in patient or allograft survival comparing recipients of heart, liver, or kidney transplant with and without ID . For heart and liver transplantation, we also found no difference in improvement in functional status between recipients with and without ID …”

Section: Discussionmentioning

confidence: 87%

“…Beginning in 2008, the SRTR began collecting information on cognitive development, academic level, and academic progress for pediatric transplant recipients. We used these data to create narrow (coded as “definite impaired cognitive development”) and broad (probable impaired cognitive development + delayed academic level or progress) definitions of ID . We found that for heart, liver, and kidney transplantation, ID was fairly common among recipients using either the narrow (107 [8.9%], 119 [7%], 117 [5.6%]) or broad (285 [24%], 254 [14.7%], 332 [15.9%]) definition of ID .…”

Section: Discussionmentioning

confidence: 99%

“…We used these data to create narrow (coded as “definite impaired cognitive development”) and broad (probable impaired cognitive development + delayed academic level or progress) definitions of ID . We found that for heart, liver, and kidney transplantation, ID was fairly common among recipients using either the narrow (107 [8.9%], 119 [7%], 117 [5.6%]) or broad (285 [24%], 254 [14.7%], 332 [15.9%]) definition of ID . For the available follow‐up time (3‐4 years), we found no difference in patient or allograft survival comparing recipients of heart, liver, or kidney transplant with and without ID .…”

Section: Discussionmentioning

confidence: 99%

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

Wightman

Diekema

Goldberg

2017

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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Prevalence and outcomes of renal transplantation in children with intellectual disability

Cited by 40 publications

References 9 publications

Update on Ethical Issues in Pediatric Dialysis: Has Pediatric Dialysis Become Morally Obligatory?

Update on Ethical Issues in Pediatric Dialysis: Has Pediatric Dialysis Become Morally Obligatory?

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

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

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