Research Article: The Turkish Neonatal Jaundice Online Registry: A national root cause analysis

Date Published: February 23, 2018

Publisher: Public Library of Science

Author(s): Omer Erdeve, Emel Okulu, Ozgur Olukman, Dilek Ulubas, Gokhan Buyukkale, Fatma Narter, Gaffari Tunc, Begum Atasay, Nazli Dilay Gultekin, Saadet Arsan, Esin Koc, Jacobus P. van Wouwe.


Neonatal jaundice (NNJ) is common, but few root cause analyses based on national quality registries have been performed. An online registry was established to estimate the incidence of NNJ in Turkey and to facilitate a root cause analysis of NNJ and its complications.

A multicenter prospective study was conducted on otherwise healthy newborns born at ≥35 weeks of gestation and hospitalized for only NNJ in 50 collaborator neonatal intensive care units across Turkey over a 1-year period. Patients were analyzed for their demographic and clinical characteristics, treatment options, and complications.

Of the 5,620 patients enrolled, 361 (6.4%) had a bilirubin level ≥25 mg/dL on admission and 13 (0.23%) developed acute bilirubin encephalopathy. The leading cause of hospital admission was hemolytic jaundice, followed by dehydration related to a lack of proper feeding. Although all infants received phototherapy, 302 infants (5.4%) received intravenous immunoglobulin in addition to phototherapy and 132 (2.3%) required exchange transfusion. The infants who received exchange transfusion were more likely to experience hemolytic causes (60.6% vs. 28.1%) and a longer duration of phototherapy (58.5 ± 31.7 vs. 29.4 ± 18.8 h) compared to infants who were not transfused (p < 0.001). The incidence of short-term complications among discharged patients during follow-up was 8.5%; rehospitalization was the most frequent (58%), followed by jaundice for more than 2 weeks (39%), neurological abnormality (0.35%), and hearing loss (0.2%). Severe NNJ and bilirubin encephalopathy are still problems in Turkey. Means of identifying at-risk newborns before discharge during routine postnatal care, such as bilirubin monitoring, blood group analysis, and lactation consultations, would reduce the frequency of short- and long-term complications of severe NNJ.

Partial Text

Neonatal jaundice (NNJ) is common in the neonatal period due to the adaptation of bilirubin metabolism that occurs at this time. The majority of newborns develop NNJ, which is the most common cause of hospital admission or rehospitalization in the first week of life [1]. The advent of maternal rhesus immunoglobulin prophylaxis, phototherapy, and exchange transfusion reduced the rates of bilirubin-induced mortality and morbidity. However, acute bilirubin encephalopathy and kernicterus are still reported in low- and middle-income countries (LMICs) and even high-income countries (HICs) [1–6].

After the Turkish Neonatal Jaundice Online Registry was established in September 2015, a multicenter prospective observational cohort study was conducted among otherwise healthy infants born at ≥35 weeks of gestation and hospitalized for only NNJ. Clinical directors in NICUs nationwide were made aware of the study, and 50 NICUs participated for the 1-year study period. The NICUs were asked to add to the registry database daily all hospitalized cases of NNJ at discharge using an online, standard, patient specific electronic case report form (eCRF). The study was approved by the Online Studies Scientific Steering Committee of the Turkish Neonatal Society and by the Ankara University institutional review board. Written informed consent was obtained from the parents or guardians of the newborns.

From September 2015 to September 2016, 5,620 hospitalized cases of NNJ were recorded. Only 2% of the patients (n = 112) were born at home. Characteristics of the patients are shown in Table 1. The patients’ median age at admission was 3 days, and their mean peak bilirubin level was 17.6 ± 4.8 mg/dL. At admission, 361 patients (6.4%) had a bilirubin level higher than the threshold for severe NNJ.

A detailed root cause analysis would enable the identification of strategies to improve the efficacy of NNJ treatment [3,6]. We conducted a nationwide root cause analysis of NNJ that, to the best of our knowledge, involved the largest population of any similar study and also evaluated treatment options and postdischarge follow-up data. The findings presented here are generally consistent with the literature, although there are several noteworthy observations. First, severe NNJ and ABE continue to occur in Turkey at frequencies higher than those in HICs but lower than those in LMICs [2,3]. The incidence of severe NNJ and bilirubin encephalopathy among NNJ patients was 6.4% and 2.3%, respectively. Second, the two most common risk factors for NNJ were a hemolytic etiology and lack of initiation of proper breastfeeding. Third, the rate of cesarean section (C/S) was higher than that recommended by the World Health Organization (WHO), and it might lead to a delay in establishment of proper breastfeeding [11]. Fourth, in spite of Rhesus anti-D prophylaxis being provided free by the state, Rhesus immunization is still the second most common cause of hemolytic jaundice.




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