Background
Neonatal jaundice, caused by elevated total serum bilirubin (TSB) levels, occurs in approximately 60–80% of all live-born infants [
1]. In Europe, 3.7 per 10,000 term and near term neonates develop severe hyperbilirubinaemia [
2]. When TSB is highly elevated, bilirubin can cross the blood-brain barrier and may cause Kernicterus Spectrum Disorder (KSD) [
3]. Initially, KSD presents as acute bilirubin encephalopathy, which in severe cases may progress to “classical kernicterus”. Although classical kernicterus is rare, consequences are severe and include permanent motor dysfunction, visual and hearing impairment, seizures, and sometimes mental retardation [
4‐
6].
KSD and its devastating consequences are entirely preventable by timely recognition and treatment of potentially severe hyperbilirubinaemia. Some countries advise universal screening for neonatal hyperbilirubinaemia by quantifying TSB or transcutaneous bilirubin (TcB) levels at least once during the first week of life [
7]. In most countries, including in the Netherlands, visual inspection by maternity care professionals is relied on as a first-line approach to identifying neonates requiring total bilirubin quantification [
8,
9]. However, visual estimation of jaundice is known to be inaccurate and therefore ineffective in preventing KSD [
8,
10,
11].
In the Netherlands, a significant proportion of neonates are born in a primary care setting or are discharged from the hospital within a few hours after birth [
12]. A maternity care assistant (MCA, i.e. a skilled nurse with a lower secondary education degree) provides maternity care for the first 8 days under supervision of a community midwife [
13]. If potentially severe hyperbilirubinaemia is suspected, the MCA will consult the community midwife, who is responsible for the mother and the neonate. The community midwife may then decide to draw blood to have TSB quantified (usually in a laboratory of a nearby hospital). If the TSB level indicates the need for treatment (usually phototherapy) or in case of another potential clinical problem [
9], a paediatrician from a nearby hospital will be consulted. Traditionally, phototherapy is performed in the hospital.
Whereas theoretically entirely preventable, KSD still occurs in the Netherlands [
14]. As MCAs have a first-line role in the recognition of potentially severe neonatal jaundice, we aimed to examine their current state of knowledge and skills regarding hyperbilirubinaemia. Accordingly, we propose recommendations for further training of maternity care professionals on the topic.
Discussion
Being alert to identify term and near term neonates with potential hyperbilirubinaemia is daily practice for MCAs. In this study, we examined the knowledge and skills of MCAs regarding neonatal hyperbilirubinaemia. We found that background knowledge on neonatal hyperbilirubinaemia among MCAs was generally adequate, with further evidence indicating that this knowledge could be improved by training or e-learning. The estimation of TSB levels based on skin colour was, however, often inadequate, generally leading to underestimation.
There have been very few previous assessments of knowledge regarding neonatal hyperbilirubinaemia among maternity care professionals. We are aware of one Egyptean study, which demonstrated knowledge deficits among primary health care physicians in multiple areas, including screening methods, symptoms of complications, and treatment of hyperbilirubinaemia [
22]. In the Netherlands, primary health care physicians are rarely involved in perinatal health care, limiting comparability of the findings of this study with ours.
Earlier studies have already demonstrated that visual inspection of jaundice is inaccurate for estimating the degree of hyperbilirubinaemia [
7,
11]. Our results support this and also indicate that MCAs generally overestimated their own ability to estimate TSB via visual inspection. Their structural underestimation of TSB levels and their predominantly applied wait-and-see approach is particularly striking, whereby potentially severe neonatal hyperbilirubinaemia can be missed in these neonates. Missed diagnoses increase the risk of neonates going on to develop severe hyperbilirubinaemia and KSD, and there are multiple examples of this still happening in everyday perinatal care even in high-income countries including in the Netherlands [
2,
23]. Hence, other approaches to timely identification of potentially severe hyperbilirubinaemia, such as TcB measurement, are needed. Our study also shows that MCAs whose level of knowledge on hyperbilirubinaemia was poor tended to have a lower ability to accurately estimate TSB levels based on visual inspection.
Together, this indicates that better knowledge on neonatal hyperbilirubinaemia may help increase MCAs’ awareness regarding the risks of potentially severe hyperbilirubinaemia and their accuracy of visual inspection. Knowledge can be increased further by training, as supported by various aspects of our study. In the national survey, knowledge was better when MCAs had received training on hyperbilirubinaemia in the previous year. Furthermore, pre-post training comparisons of MCAs’ knowledge on hyperbilirubinaemia in the STARSHIP training sessions indicate that these trainings, as well as the preceding e-learning, effectively increased MCAs’ knowledge. According to Lahti et al., e-learning can be as effective as traditional learning methods regarding knowledge, skills, and satisfaction of nurses and student nurses [
24]. This suggests that e-learning can be used as an alternative for traditional training to further increase the knowledge of MCAs regarding neonatal hyperbilirubinaemia.
In the interpretation of our study it is important to consider a number of strengths and limitations. For the online survey, we were able to obtain a very large and – importantly − representative sample of all Dutch MCAs. Despite the large number of respondents, the response rate was only 16%. Other surveys among MCAs in the Netherlands have had response rates of 20–30% [
25,
26]. The low response rate may have introduced nonresponse bias, as in that respondents might represent a selected sample of all MCAs in the Netherlands. Respondents may have been more interested in neonatal hyperbilirubinaemia beforehand than non-respondents, and may have had more knowledge on neonatal hyperbilirubinaemia, potentially leading to overestimation of the knowledge of MCAs regarding the topic. On the other hand, the realisation of MCAs that they lack knowledge on neonatal hyperbilirubinaemia and might learn something about it, may have resulted in overrepresentation of MCAs with less knowledge on neonatal hyperbilirubinaemia. It is not possible to assess the direction of any bias, if present, although the representativeness of the sample is somewhat reassuring. In the current study we were unable to collect data on knowledge and skills regarding neonatal hyperbilirubinaemia among all maternity care professionals in the Netherlands, such as obstetric nurses, midwives, obstetricians, and paediatricians. Nevertheless, as MCAs are mainly relied on for the first-line recognition of neonatal jaundice in the Dutch primary care setting, we consider these results highly relevant for clinical practice.
To allow assessment of knowledge and skills regarding neonatal hyperbilirubinaemia in a large cohort, we created a short online survey. This survey consisted of six knowledge questions covering different topics in the field of neonatal hyperbilirubinaemia. We acknowledge that the discriminative value of this short questionnaire to assess differences between the levels of knowledge among MCAs maybe somewhat limited, although the findings indicate that relevant differences in knowledge could in fact be identified and that these also appear to translate into variation in skills. In the online survey, we emphasised that the participants should not look up the correct answers, however we were unable to ensure that looking up the answers did not happen. If it did, this may have resulted in an overestimation of MCAs’ knowledge level and this should be taken into account when interpreting our results. Also it is important to note that our study may in itself have served to raise awareness of the importance of appropriate jaundice assessment and improved knowledge on the topic among MCAs through the Hawthorne effect [
27].
Not only was the theoretical knowledge established in the online survey, but also clinical performance was tested using three cases of jaundice with photographs taken by a medical photographer. The colouration of these photographs may have differed among respondents according to the quality and the settings of their computer screen, although this is unlikely to have influenced our findings.
To the best of our knowledge, this is the first study to have investigated the knowledge and skills of MCAs regarding neonatal hyperbilirubinaemia. The findings indicate that MCAs overestimate their ability to assess TSB via visual inspection, at the same time confirming that visual inspection to assess hyperbilirubinaemia is inaccurate and prone to underestimation. We furthermore show that knowledge on hyperbilirubinaemia can be improved via training, potentially leading to improved ability to assess neonatal jaundice and to initiate appropriate action. Further research is needed to assess the knowledge and skills regarding neonatal hyperbilirubinaemia among other maternity care professionals, and to explore opportunities to improve recognition of neonatal hyperbilirubinaemia in the primary care setting, for example via screening programmes. Based on our findings, setting up regular training programmes for MCAs to update their knowledge and skills regarding neonatal hyperbilirubinaemia is recommended. Increased awareness among maternity care professionals caring for otherwise healthy neonates in primary care and more accurate approaches to recognition of hyperbilirubinaemia in these neonates are needed to help improve early recognition of potentially severe hyperbilirubinaemia and prevent the occurrence of KSD.
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