Biliary atresia (BA) is a rare cholangiodestructive disease affecting infants. Management involves a Kasai portoenterostomy procedure (Kasai) to re-establish bile flow and alleviate jaundice, with liver transplantation required if bile flow is not restored.¹

Several unlicensed medications are prescribed post procedure, including fat-soluble vitamins, antibiotics, steroids and phenobarbitone. The availability of relevant medicines information (MI) for unlicensed medicines is limited and can affect adherence and increase the risk of medication errors. In addition, poor health literacy and adherence to medications are known to negatively impact on the outcomes of children with chronic conditions.² To support families through the procedure MI is provided by the specialist nurse, prior to, during admission and on discharge via shared care. This project aims to evaluate parental/carer experience of MI provided post Kasai and identify areas for improvement.

Families of children who underwent Kasai between June 2020 and 2022 were invited to complete a questionnaire. Ethical approval was not required for the service evaluation, local committee approval and prior parental/carer consent was obtained.

Out of 38 families identified, 23 agreed to take part and were included in the analysis. Families originated from a wide range of geographies across 13 countries, with 48% identifying as British nationals. 52% of families spoke English as a first language and all as a second language. The majority found it either ‘very easy’ (61%) or ‘easy’ (30%) to understand written MI in English, those who found it difficult, independently translated the MI. There was a high level of parental satisfaction (91% ‘very satisfied’/’satisfied’) regarding amount and quality of MI received. Despite this, 91% families contacted the specialist nurse, pharmacist or consultant team via shared care for further MI queries and 52% conducted independent internet searches for further information. Families felt least confident when asked about the risks and benefits of medication use, side effects and interactions with other medicines. One family reported a medication error occurred due to lack of understanding of dose changes post discharge.

The majority of families are satisfied with the current provision of MI post Kasai procedure, with a high use of shared care services for MI post discharge. There is an opportunity to improve the MI we provide, using targeted medicines leaflets, which include risks and benefits of unlicensed treatments, side effects and their management and medication interactions. Improved availability of accessible MI in a variety of languages and translation services for families may improve future satisfaction, adherence and help reduce some health inequalities currently experienced by our families.

References

1. Lakshminarayanan B, Davenport M. Biliary atresia: a comprehensive review. J Autoimunne 2016. Published online June 23 DOI: 10.1016/j.jaut.2016.06.005

2. Zaidman E, Caldwell P, Hahn D. Impact of health literacy of parents of the health outcomes of children with chronic disease. A systematic review. J Paediatr Child Health 2019.