Approaches to Biliary Atresia Care at Cincinnati Children’s - Anna Peters, MD, PhD - Racial disparities in the early diagnosis of biliary atresia
With Dr. Anna Peters
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What the experts said
An 8-week-old Hispanic male had an elevated direct bilirubin of 1.1 on day of life 2 that was not followed up, and ultimately received Kasai on day 62.
Making a diagnosis around 30 days of age is probably the best achievable target, as ruling out other causes takes time.
In North America, biliary atresia has an incidence of 1 in 20,000 live births.
In the Cincinnati Children's cohort of 69 patients, median time to hepatology encounter was 67 days in non-white infants versus 37 days in white infants (statistically significant).
The rate of Kasai offering was 53% in non-white patients versus 84% in white patients.
White infants were almost 5 times more likely to receive Kasai than non-white infants (odds ratio from logistic analysis).
Neighborhood deprivation index was not different between white and non-white BA infants.
Infants who did not receive Kasai had higher neighborhood deprivation index compared to those who did.
Infants who were transplanted by age 2 or died had higher neighborhood deprivation index than those who survived to age 2 with native liver.
After controlling for race, infants with high neighborhood deprivation index were about 50% less likely to receive Kasai or survive 2 years with native liver.
Race and socioeconomic status individually affect referral timing and access to surgical treatment for biliary atresia.
Socioeconomic status affects transplant-free survival independently of race.
Cincinnati Children's Pediatric Primary Care Center changed practice to automatically order fractionated bilirubin whenever total bilirubin is measured for jaundice evaluation.
Biliary atresia incidence of 1 in 20,000-25,000 is similar to cystic fibrosis, which is included on newborn screening.
Kidney transplant advocacy successfully changed Medicare/Medicaid coverage of immunosuppressive medications beyond one year post-transplant.
The Harperva Group with Canadians published that direct bilirubin screening would cost $473,000 per year of life gained.
Japan has developed a percutaneous device to detect direct bilirubin, with patent pending.
Cincinnati Children's offers a Physician's Priority Link with 2-5 minute response time for any physician to reach hepatology on call 24 hours a day.
Stool color card screening in Far East studies reduced time to Kasai from 70 to 60 days, not to the target of less than 45 days.
Cincinnati Children's asks post-Kasai families to send stool pictures at least a couple times per week, sometimes daily, to optimize recovery trajectory.
There is less than 20% success rate of drainage after Kasai if performed in infants over 90 days of age.
Bilirubin level greater than 2 at 3 months after Kasai predicts only 20% 3-year transplant-free survival.
AAP guidelines recommend fractionated bilirubin in formula-fed infants jaundiced at more than 2 weeks, but allow waiting up to 4 weeks in breastfed infants.
NASPGHAN guidelines recommend fractionated bilirubin in all jaundiced infants.
The Texas Children's Hospital newborn screening program decreased time to diagnosis by about 1 month.
In the Utah Intermountain Health System study of 253,000 well babies including 18 with biliary atresia, all BA infants had elevated conjugated bilirubin in the newborn period ranging from 0.6 to 4.5.
A 1995 study first described that African-American infants were on average 2.5 weeks older than white infants at time of Kasai.
In a 2018 study, risk factors for late Kasai (after day 60) included being African-American and being uninsured.
In China and Taiwan, parents are taught to upload photos of baby's stool to a website where it is evaluated, likely by AI.