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Despite similar kidney transplant outcomes, adults with intellectual and developmental disabilities (IDD) were less likely than the general population to be evaluated for transplant and less likely to receive one, a propensity-score matched analysis found.

In the cohort of more than 21,000 end-stage kidney disease (ESKD) patients on Medicare, multivariable analysis showed that patients with IDD were 54% less likely than those without IDD to be evaluated by a transplant surgeon (OR 0.46, 95% CI 0.43-0.50) and 62% less likely to receive a transplant (OR 0.38, 95% CI 0.34-0.42), according to researchers led by Brittany Hand, PhD, of The Ohio State University School of Health and Rehabilitation Sciences in Columbus.

Among the subset evaluated by a transplant surgeon, about a fourth of the patients included overall, those with IDD had 51% lower odds of receiving a transplant (OR 0.49, 95% CI 0.43-0.55), the group reported in .

"There's a breakdown in that process before they're getting in front of a transplant surgeon to be evaluated, and then subsequently, continuing barriers that are being faced in the pipeline to getting a transplant," Hand told MedPage Today.

In the study, there were no differences in terms of transplant outcomes for IDD patients compared with the general population.

"There's not any reason that primary care providers and transplant centers should not be fully considering these patients for these life-saving medical procedures," said Hand.

According to the researchers, a "commonly cited reason for excluding people with IDD from transplant wait lists is concern that they may have difficulty following posttransplant care, putting them at greater risk of perioperative complications, mortality, or graft failure."

But they said an "emerging body of literature, primarily using pediatric cohorts," does not support this notion, nor did the findings from their large cohort study of adults.

Between the IDD and non-IDD groups, Hand's group observed similar rates of perioperative complication, 90-day readmission, and graft rejection within 1 year:

• Perioperative complications: 31.6% vs 29.4%, respectively (OR 1.09, 95% CI 0.85-1.39)
• Readmission at 90 days: 41.2% vs 38.8% (OR 1.13, 95% CI 0.89-1.46)
• Graft rejection at 1 year: 8% vs 7.5% (OR 1.05, 95% CI 0.69-1.64)

Hand and co-authors said the results "support kidney transplant among adults with IDD and underscore the urgent need for anti-discrimination initiatives to promote the receipt of equitable care for this population."

Only that explicitly prohibit discrimination against people with disabilities in transplantation, they noted, adding that there's a need for strong evidence to back new policies -- like a that would prohibit healthcare providers from denying someone access to an organ transplant because of a disability.

"We echo the authors' assertion that there is an urgent need to address bias and curb discrimination against this vulnerable patient population," said Melissa Chen, MD, and Alexander Toledo, MD, both of the University of North Carolina at Chapel Hill, writing in an .

Chen and Toledo added that the impairment level of patients with IDD and accompanying caregiving plan for the patient must be weighed when interpreting the relatively low referral and transplant rates.

The editorialists and Hand acknowledged that life post-transplant involves intensive follow-up care and medication -- something that may affect referrals of patients with IDD. "Is abandoning the embedded, thrice-weekly access to transportation and social workers with in-center hemodialysis for the benefits and challenges of transplant always the right path?" Chen and Toledo asked. "The answer likely depends on the strength of the caregiving plan."

They also noted that a primary care physician or nephrologist's appraisal of someone's social support is also subject to bias.

Data for the study came from the Medicare Standard Analytical Files for the years 2013 through 2020. The propensity score-matched cohort included 21,384 adults (median age 55 years) with ESKD (a diagnosis that makes anyone in the U.S. eligible to receive Medicare). A total of 60.8% were women, and 64.1% were white.

Disabilities recorded among the 10,692 patients with IDD included cerebral palsy (21.5%), Down syndrome (9.1%), and autism (9.7%), among others.

Overall, 633 patients with IDD (5.9%) received a kidney transplant as compared with 1,367 without IDD (12.8%). Evaluation by a transplant surgeon occurred in 19.9% and 30.6% of the two groups, respectively. Among those seen by a transplant surgeon, 624 adults with IDD (29.4%) and 1,357 adults without IDD (41.2%) received a transplant.

The propensity score-matched subgroup of those that received kidney transplants included 1,258 adults, half with IDD. Here, the median age was 37 years, two-thirds were women, and 65% were white.

Hand acknowledged to MedPage Today that the team did not control or match for income or geographical location. The researchers also noted that it's possible some adults with IDD were left out of the IDD group if they didn't have an evaluation for a transplant from 2013 to 2020 with an IDD diagnosis. Medicare data also do not say if organ donors were deceased or living, nor contain "psychosocial variables indicative of transplant appropriateness," which could affect a patient's readiness for a transplant. There was also no examination of postoperative care and treatment adherence, nor was there a way to know how many adults chose not to have a transplant, even if they were offered one, the team said.

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