Diagnostic Challenges and Transplant Outcomes in Pediatric Cholestatic Liver Disease, With Ahmad Anouti, MD

New research is shedding light on racial disparities in post-liver transplant outcomes among children with cholestatic liver disease.

The analysis of United Network for Organ Sharing (UNOS) data identified greater post-transplant mortality among non-Hispanic Black children with cholestatic liver disease compared with non-Hispanic White patients, even after adjustment for clinical factors. Although the study could not determine causality, the findings raise concern that delays in recognition and diagnosis may contribute to these disparities.

“Anecdotally, you hear a lot of patients say jaundice was detected too late,” study author Ahmad Anouti, MD, a pediatric resident at UT Southwestern, told HCPLive. “To be honest with you, many clinicians and practitioners have a difficult time realizing jaundice in patients of different skin color tones. We're not well trained or well versed on that.”

Inspired by uncertainty regarding whether delays in post-transplant outcomes are based on race and ethnicity, Anouti and colleagues retrospectively examined UNOS data for 3501 pediatric patients ≤ 18 years of age who were listed or received a liver transplant for cholestatic liver disease between 2010 and 2024. 

Results published in Pediatric Transplantation showed non-Hispanic White recipients were more likely to have private insurance (56.7% vs 18.2%; P <.01) and experienced shorter waitlist times than Hispanic patients (175.9 vs 189.4 days; P <.01). Of note, the 1-year survival rate was lower in non-Hispanic Black than in non-Hispanic White recipients (94.8% vs 96.8%; P = .04), with no significant difference at 5 years (93.7% vs 95.4%; P = .13).

While Hispanic patients had similar 1-year (95.9%; P = .26) and 5-year (93.3%; P = .06) survival rates to non-Hispanic White patients, non-Hispanic Black recipients had a significantly increased risk of mortality with (hazard ratio [HR], 1.53; 95% CI, 1.05–2.22). Predictive modeling using extreme gradient boosting showed a relative likelihood of increased mortality in non-Hispanic Black (3.91%) and Hispanic (3.14%) recipients.

“We feel that this might [suggest] that maybe patients of different ethnicities and backgrounds are seen at a later time due to more challenging diagnosis and not being taken as seriously as other patients,” Anouti explained, describing the importance of always starting a clinical work up whenever jaundice is suspected.

Anouti additionally emphasized the need to look beyond the skin alone. Although he says jaundice is the most commonly discussed sign of pediatric cholestatic liver disease in medical education, he describes the importance of also considering things like the eyes, gums, and fingernails, which may offer better insight than skin examination alone.

“I think it's sad that in this day and age, we have kids actively dying or having worse outcomes just because we're delaying care,” he said.

Editors’ Note: Anouti has no relevant disclosures.

References

Anouti A, Dahshi H, Rady ED, et al. Racial Disparities in Pediatric Patients With Cholestatic Liver Disease Undergoing Liver Transplant: A UNOS Database Study. Pediatr Transplant. 2026;30(1):e70261. doi:10.1111/petr.70261