Improving post-discharge neonatal surveillance for the jaundiced newborn.
In this issue of the Acta,1 Kaplan and co-workers report low rates of community surveillance for neonatal jaundice following birth hospital discharge, a not unexpected finding, but one that merits scrutiny and emphasis. The overwhelming majority of newborns born at ≥35 weeks of gestation are discharged before they are 48 hours old whereas the total serum bilirubin (TSB) level typically does not reach its peak until the infant is 4 or 5 days old. This means that severe hyperbilirubinemia can, and does, occasionally occur during a period in which the infant is not observed by any professional caregiver.2-4 As a result, on rare occasions, unrecognised extreme hyperbilirubinemia has occurred, posing a direct risk for acute and then chronic bilirubin encephalopathy (CBE) or kernicterus.3, 4 Because of these rare, but disastrous events, many countries, including Israel, have developed guidelines for the timing of the first post-birth follow-up visit and the actions to be taken at that visit, including the measurement of the TSB or transcutaneous bilirubin (TcB) level.5 The data of Kaplan et al remind us that if you want a family to follow your instructions you need to ensure that the instructions are detailed, specific, understandable, relevant and achievable. Parental compliance for those instructed to return ‘when given a specific date, place and time (for bilirubin blood testing)’ was 99%, compared with 67% compliance for those who received ‘specific instruction for early follow-up’ and 33% for lower-risk infants whose parents were asked to follow-up at their community clinic within 72 hours of discharge.1 As also noted by these authors (references 14-16), US data on post-discharge follow-up compliance are sparse and uniformly poor. The lowest compliance in the Israeli population occurred among the Jewish ultra-orthodox and Arab subsets, both communities afflicted by economic privation, a well-known impediment to the delivery of appropriate health care.6 As 8 of 10 normal newborns appear jaundiced at some time in the first week of their lives 7 but only about 1-4/10 000 develop a TSB of ≥30 mg/dL (430-510 µmol/L)3, 8 and are at risk of CBE, it can be a challenge to identify those at greatest risk. Although we have well-established risk factors for the development of subsequent severe hyperbilirubinemia2, 5, 7, 9 and many (but not all) countries now include the measurement of the infant's TSB or TcB prior to discharge as the standard of care, the utility of these measurements depends upon how the providers act on these findings and then take the necessary steps to ensure appropriate and timely follow-up. As shown in the Kuzniewicz et al study3 and elsewhere,10 the prediction of extreme hyperbilirubinemia in G6PD deficient newborns remains a particularly difficult and, as yet, unresolved and important problem. Because extreme hyperbilirubinemia still occurs, it should now be clear that if we are to prevent CBE, in addition to identifying infants at risk before they are discharged, the post-discharge follow-up is, if anything, even more important. What needs to be done to achieve this? First and foremost, every facility taking care of newborn infants must provide the caregivers with both verbal and written information about jaundice and the risks of hyperbilirubinemia with advice regarding the parental actions to be taken should the infant appear more jaundiced or develop any of the early signs of acute bilirubin encephalopathy. In addition to this information, for any infant considered to be at risk for hyperbilirubinemia, including those belonging to ethnic groups in which G6PD deficiency is prevalent, a follow-up appointment should be scheduled that specifies the date and site of the appointment and parents should be told whether or not a repeat TSB or TcB is recommended.5 The advice to ‘follow-up in 1-2 days with your physician (or a specific clinic)’ is not acceptable. Ideally, this appointment should be made by a member of the hospital staff (with the parents’ agreement) or by the parents’ themselves before the infant is discharged so that all parties are fully informed about the place and time of the follow-up appointment. As illustrated by the data provided by Kaplan et al, compliance with appointments made in this way is much more likely to occur. In addition, information should be sent by fax or email to the follow-up physician or clinic. If a TSB or TcB has been obtained during the birth hospitalization that information should be provided in writing to the parents so that it can be shown to the follow-up physician. Additional circumstances require consideration. Do the parents have adequate transportation to ensure that a follow-up appointment can be kept? Is it possible that weather conditions might interfere? If the recommended follow-up date happens to be on a weekend day or a public holiday, alternative arrangements must be made. It might be necessary for the infant to be kept in the hospital for another day or arrangements made for a TSB to be obtained at an outpatient laboratory and the information communicated to the hospital-based physician. The jaundiced newborn infant presents a unique problem. For the overwhelming majority of newborns, this is a normal event that will resolve spontaneously, but for the rare newborn who develops extreme hyperbilirubinemia, the outcome can be disastrous. It is for these infants that appropriate follow-up can be the factor that determines the infant's outcome. Drs. Maisels and Watchko have acted as expert witnesses in medicolegal cases of kernicterus, and both were consultants to the pharmaceutical company, Mallinckrodt Inc, in the process of attempting to obtain FDA (Food and Drug Administration) approval of the drug Stannate (tin-mesoporphyrin), a drug that can be used to prevent or treat neonatal hyperbilirubinemia. Dr Maisels has acted as a consultant for Draeger Inc, the company that markets a device that measures transcutaneous bilirubin levels and as a consultant for Capnia Inc, the company that markets the CoSense® carbon monoxide monitor. M. Jeffrey Maisels Jon F. Watchko
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