Implementing Continuous Nursing Care After Kasai Procedure in Infants with Biliary Atresia

Summary

This article presents a reproducible protocol for continuity of nursing care following Kasai portoenterostomy in infants with biliary atresia. The protocol standardizes discharge education, scheduled in-person and remote follow-up, complication surveillance, and family training, and illustrates representative outcomes in growth, bilirubin clearance, cholangitis, rehospitalization, and parental satisfaction.

Abstract

Biliary atresia (BA) is a severe cholangiopathy of infancy characterized by progressive obstruction of the extrahepatic bile ducts. Kasai portoenterostomy remains the standard initial treatment, but postoperative complications such as cholangitis, malnutrition, and progressive jaundice remain common and can compromise long-term outcomes. Conventional discharge guidance often lacks continuity, leading to poor family adherence and delayed recognition of complications once the infant returns home.

To address this gap, we developed and implemented a standardized protocol for continuity of nursing care (CNC) following Kasai portoenterostomy in infants with BA. The protocol integrates structured discharge education, a 6-month follow-up schedule with clinic or tele-clinic visits, remote monitoring through telephone or secure messaging, and targeted parental training in nutrition, medication management, and early symptom recognition. Nurses use unified follow-up forms, predefined escalation thresholds, and weekly data verification to ensure data accuracy and consistent delivery of interventions.

The primary objective of this study was to describe the CNC protocol in sufficient detail to enable replication. A secondary objective was to present representative outcomes comparing infants managed with CNC versus historical controls receiving routine nursing care. Infants in the CNC group showed greater postoperative weight gain and more rapid declines in total bilirubin levels within 6 months, while rates of cholangitis and rehospitalization showed favorable but statistically nonsignificant trends. Parental satisfaction was significantly higher in the CNC group, reflecting improved engagement and perceived support. This protocol offers a practical framework that other centers can adapt to strengthen postoperative nursing care and family participation in the management of infants with biliary atresia.

Introduction

Biliary atresia (BA) is a rare but life-threatening cholangiopathy of infancy characterized by progressive inflammatory obstruction of the extrahepatic bile ducts and, if untreated, progression to end-stage liver disease¹. Kasai portoenterostomy remains the standard initial surgical treatment and can restore bile flow and delay or reduce the need for liver transplantation in some infants². However, despite advances in surgical technique and perioperative care, many patients develop late cholangitis, persistent jaundice, growth failure, or progressive hepatic fibrosis that continue to threaten long-term survival

Protocol

Obtain approval for this protocol from the institutional ethics committee of the participating hospital before enrolling any participants. Ensure that all procedures comply with the Declaration of Helsinki and relevant national regulations. Before enrollment, explain the aims of the continuity-of-care program, the data-collection procedures, and potential risks and benefits to parents or legal guardians. Obtain written informed consent from the parents or guardians of all infant participants, including consent for participation in the continuity-of-care program, collection and analysis of de-identified data, and publication of anonymized images where applicable. De-id....

Results

Baseline characteristics
Table 1 summarizes the baseline characteristics of the CNC and control groups. There were no statistically significant differences in sex distribution, age at admission, or admission weight (all P > 0.05). These findings suggest broadly similar demographics between groups at admission; however, other potentially relevant prognostic variables (such as preoperative cholestasis severity, hepatic fibrosis or stiffness, and viral status) were not consistently a.......

Discussion

Biliary atresia (BA) is a progressive cholangiopathy of infancy in which untreated obstruction of the extrahepatic bile ducts leads to cholestasis, fibrosis, and eventually liver failure. Kasai portoenterostomy remains the standard initial surgical treatment and can restore bile drainage and improve survival in a substantial proportion of infants¹¹. Nevertheless, late postoperative cholangitis remains a major clinical challenge that compromises both surgical outcomes and quality of life

Materials

List of materials used in this article

Name	Company	Catalog Number	Comments
Access-controlled institutional storage (folder/server)	Institution	N/A	Secure storage for completed forms and de-identified datasets; access restricted to authorized staff.
Braun ThermoScan 7 ear thermometer	Braun	IRT6520	Clinical thermometer. Use the model available at your site if different.
Cisco IP Phone 8841	Cisco	CP-8841-K9=	Telephone (for scheduled follow-up calls). Use the telephone system approved at your site if different. Source: https://www.cisco.com/c/en/us/products/collateral/collaboration-endpoints/unified-ip-phone-8800-series/datasheet-c78-731638.html
cobas c 702 module (cobas 8000)	Roche Diagnostics	06473245001	Clinical chemistry analyzer (for total bilirubin testing). Used for routine clinical chemistry including total bilirubin.
Dell OptiPlex 7010 Micro	Dell	7010MC-I5508G-256GB-W11	Desktop computer (data entry workstation). Used for data entry, secure file management, and documentation. If your site uses a different workstation model, replace accordingly. Source: https://computaas.com/dell-optiplex-7010-micro-7010mc-i5508g-256-w11-i5-13500t-8gb-256gb-ssd-w11-pro
Electronic medical record (EMR) access	Institution	N/A	Source for baseline clinical variables, surgery/discharge information, and documented postoperative complications.
Forms A–E (English)	Self-developed (study team)	N/A	Data-collection and workflow forms used in the CNC protocol; provided as Supplementary files.
Illustrated stool-color reference card	Self-developed (study team)	N/A	Used to classify stool color; caregivers refer to the card and share photos if abnormal.
Informed consent form (IRB-approved)	Institution	N/A	Ethics-approved consent document used before enrollment; maintained per institutional policy.
Institutional CNC database with automated backups	Institution	N/A	Central database for follow-up records and laboratory results; backup schedule per protocol (e.g., weekly).
iPhone 13	Apple	A2633	Smartphone (for caregiver photo exchange during follow-up). Used to receive caregiver photos via the hospital-approved messaging platform. Use the smartphone available at your site if different. Source: https://support.apple.com/en-in/111872
Participant screening and enrollment log	Self-developed (study team)	N/A	Tracks eligibility assessment, consent status, and assignment of a unique study ID.
seca 376 baby scale	seca	3767021098	Infant digital scale (calibrated). Use the model available at your site if different.
Spreadsheet software (Microsoft Excel)	Microsoft	O365ProPlusRetail	Microsoft 365 Apps for enterprise; Office Deployment Tool Product ID used for deployments.
Total bilirubin reagent kit (Bilirubin Total Gen.3, BILT3)	Roche Diagnostics	05795419190	Common reagent for cobas c 701/702. Record total bilirubin results per routine lab workflow; if your site uses a different analyzer/reagent, replace with the local product.
WeChat (Tencent)	WeChat	N/A	Hospital-approved secure messaging platform. At each scheduled remote contact, use a hospital-approved secure messaging platform to exchange images (e.g., stool photographs). Example platform: WeChat (Tencent) or equivalent institution-approved app; record platform used in Form D if required by local policy.