Aim of the study. Early Kasai portoenterostomy is favorable for outcome in patients with biliary atresia (BA). To achieve earlier referral of jaundiced infants, we undertook this study to get information about factors that may delay referral.
Methods. All parents of BA children operated from 2000-2016 were sent a questionnaire concerning handling of presenting symptoms of BA. The study was approved by the institutional review board, and informed consent was obtained.
Results. Parents of 40 out of 45 BA children (89%) returned the questionnaire. Jaundice was observed median 1 (range 0-10) week after birth. In 63% of cases caregivers were the first to express concern to health professionals about jaundice. When caregivers were the first to address jaundice, 12% of the babies were referred immediately for further examination, whereas 88% of parents had to contact different health professionals several times for referral of their icteric child. When health professionals were the first to notice jaundice, babies underwent portoenterostomy at median 32 (4-80) days compared to 72 (16-145) days when parents first noticed jaundice (P=0.003). Children of Caucasian origin underwent portoenterostomy at median 63 (4-112) days as opposed to median 73 (13-145) days in Non-Caucasian babies (P=0.024). Throughout this 16-year period, the frequency of parents having to contact health professionals more than once for referral of their jaundiced child, did not change (58% from 2000-2008 versus 52% from 2009-2016).
Conclusion. An alarming rate of parents addressing jaundice in their baby to health professionals, are not taken seriously. Primary health care professionals are more likely to refer jaundiced babies if they recognize the symptoms themselves than if parents report jaundice as a symptom. Awareness of jaundice and guidelines for handling neonatal jaundice should be improved in the primary health care system.