Title: Promoting and hindering factors for implementation of the Infant Stool Colour Card in Dutch youth health care organizations

Source: European Journal of Pediatrics 2025, 184 (7): 390

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Date of publication: June 2025  

Publication type: Qualitative study

Abstract: Biliary atresia is a rare life-threatening cholestatic disease of early infancy, and early treatment largely improves its prognosis. Currently, use of the Infant Stool Colour Card (ISCC) to improve early detection is implemented in several youth health care (YHC) organizations in the Netherlands. We aimed to map the promoting and hindering factors for implementation of the ISCC. We performed a qualitative study with semi-structured interviews among small and large Dutch YHC organizations. We included organizations that implemented the ISCC, and that did not. For both, we interviewed youth public health (YPH) physicians and nurses involved in the organizational policy regarding hyperbilirubinemia, using an interview topic guide based on the Consolidated Framework of Implementation Research. Ten of 17 approached YHC organizations participated (with 10 physicians and 3 nurses), among which all three organizations that implemented the ISCC. Major promoting factors were the positive attitudes of YPH professionals towards the ISCC, a sense of competence among YPH professionals, the ISCC’s simplicity, the compatibility with workflows, and the involvement of key stakeholders. Major hindering factors were limited knowledge and inadequate risk perception of biliary atresia among YPH professionals and general practitioners (GPs), insufficient ISCC integration within YHC organizations (lack of repeated training and lack of a designated responsible professional), and insufficient collaboration with GPs.

Conclusion: To implement use of the ISCC, comprehensive, interactive training and education on its rationale and use for YPH professionals and GPs are essential. The successful embedding of the ISCC into YHC organizations requires a designated professional.

What is known: • There is a delay in diagnosing biliary atresia in the Netherlands. • The Infant Stool Colour Card led to earlier diagnosis and surgery in different countries, which largely improves the prognosis of biliary atresia.

What is new: • The Infant Stool Colour Card is included in the new Dutch national guideline ‘Early detection and diagnosis of biliary atresia’ as a standard screening method in case of prolonged jaundice in youth health care organisations. • This study maps barriers and promoting factors of the ISCC to ensure successful implementation within Dutch youth health care organisations.

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Title: A review of the current policies and guidance regarding apgar scoring and the detection of jaundice and cyanosis concerning black, asian and ethnic minority neonates

Source: BMC Pediatrics 2024, 24 (1): 198

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Date of publication: March 2024

Publication type: Review article

Abstract: Background: Ethnic inequalities in maternal and neonatal health in the UK are well documented. Concerns exist regarding the use of skin colour in neonatal assessments. Healthcare professionals should be trained to recognise symptoms of diverse skin tones, and comprehensive, and inclusive guidance is necessary for the safe assessment of all infants. Disparities in healthcare provision have been emphasised during the COVID-19 pandemic, and additional research is needed to determine whether such policies adequately address ethnic minority neonates.

Methods: A desktop search included searches of guidance produced for the United Kingdom (UK). Further searches of the Cochrane and World Health Organization (WHO) were used to identify any international guidance applicable in the UK context.

Results: Several policies and one training resource used descriptors ‘pink,’ ‘pale,’ ‘pallor,’ and ‘blue’ about neonatal skin and mucous membrane colour. No policies provided specific guidance on how these colour descriptors may appear in neonates with different skin pigmentation. Only the NICE guidance and HEE e-learning resource acknowledged the challenges of assessing jaundice in infants with diverse skin tones, while another guideline noted differences in the accuracy of bilirubin measurements for the assessment of jaundice. Three policies and one training resource advised against relying on visual observation of skin colour when diagnosing neonatal conditions. The training resource included images of ethnic minority neonates, although most images included white infants.

Conclusions: Inadequate consideration of ethnicity in UK policy and training perpetuates disparities, leading to inaccurate assessments. A review is needed for inclusivity in neonatal care, regardless of skin pigmentation.

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In July 2023, a new report from the NHS Race and Health Observatory highlighted an issue we have been thinking about for a while here at Children’s Liver Disease Foundation (CLDF) – identifying jaundice in newborn babies with different skin tones, and in particular the subjective nature of assessing jaundice using skin colour alone. The report is very timely and brings into focus some important issues, such as the need for a national bank of images showing medical conditions in darker skin, improved training for healthcare professionals and the use of more culturally appropriate terminology.

We also agree that genuine guidance on this issue is long overdue. Healthcare professionals, particularly midwives, health visitors and students, have repeatedly told us that they are concerned about detecting jaundice in Black, Asian and minority ethnic babies. So far, national guidance and good research has been lacking. The National Institute for Health and Care Excellence (NICE) recognises that jaundice can be more difficult to spot in darker skin, but they currently offer no recommendations for action.

There is some hope that things are changing. Research articles in recent years have started to focus on the use of transcutaneous bilirubin monitors as tools to assess jaundice. Such devices certainly add to the diagnostic options available, but we also need to consider what we can do for midwives and health visitors working in community settings without immediate access to these technologies.

So, what advice can we give to healthcare professionals? We can begin with a reminder that skin colour is not the only way to assess jaundice in a newborn. Other methods are documented in the literature and their merits are often discussed amongst healthcare professionals. Options include checking for yellowing on the palms of the hands or the soles of the feet, which could be easier to see in babies with darker skin tones. Checking for yellowing of the whites of the eyes (sclera) and of the gums are also used regularly. However, it is worth remembering that these methods still rely on visual inspection, so can be subjective.

At CLDF, we promote the use of other indicators that may be particularly useful in Black, Asian and minority ethnic babies and in community settings. We recommend using stool and urine colour as more consistent indicators for neonatal jaundice and the detection of liver disease. Urine that is persistently yellow and which stains the nappy and stools that are persistently pale in colour may indicate that there is a problem. As with other techniques, stool and urine colour can be subjective, so we have developed a stool colour chart to help. This allows healthcare professionals to check the colour of a babies’ stool against a printed card, or against an electronic version via our app. Both resources are included in our Yellow Alert pack, which is available free to all healthcare professionals.

There is evidence to suggest that stool charts can have a positive impact on jaundice and liver disease recognition. They have been used in many countries for helping to diagnose Biliary Atresia, the most common childhood liver disease and have the added advantage of being cheap and portable. Midwives and health visitors have told us that they find it useful to have something they can take with them to appointments. The stool chart can also be given to new parents to encourage them to check stools and to seek further advice if needed.

So, where do we go from here? Without specific national guidance, and with the need to support healthcare professionals in detecting jaundice and liver disease in babies of all skin tones, a range of diagnostic methods remains the best option. However, we recommend that a stool chart should be a key part of the process and can easily be distributed and used more widely. By supplementing this with better training for healthcare professionals, we will have more chance of detecting and treating jaundice and liver disease in a timely manner.

Joanne Taylor
Information and Awareness Lead
Children’s Liver Disease Foundation
irhm@childliverdisease.org

Stool charts are available free to all healthcare professionals as part of our Yellow Alert resources and can be viewed online or ordered in hard copy using our order form.

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