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 survival³.

These complications frequently arise after hospital discharge, when families assume primary responsibility for daily care and when direct professional supervision is limited⁴. Given the chronic nature of BA and the long recovery period after Kasai portoenterostomy, conventional discharge education focused mainly on short-term precautions is often insufficient to ensure sustained adherence to dietary and medical regimens or timely recognition of early warning signs⁵. Caregivers frequently report uncertainty and lack of confidence in home management, highlighting the need for structured support that extends beyond the inpatient episode⁶.

Continuity of nursing care (CNC) has therefore been proposed as an extended model that combines standardized discharge preparation, scheduled follow-up, remote monitoring, and targeted family training⁷. This approach emphasizes both professional oversight and the empowerment of parents to take an active, informed role in rehabilitation and complication prevention⁸. At the same time, outcomes after Kasai portoenterostomy are known to depend on multiple clinical factors, including age at surgery, preoperative cholestasis severity, hepatic fibrosis or stiffness, and the occurrence and burden of postoperative cholangitis^9,10. These dimensions must be considered when interpreting the effects of any new care model on clinical outcomes.

In this context, the present work has two aims. The primary aim is to describe, in a detailed and stepwise manner, a CNC protocol for infants with BA following Kasai portoenterostomy, so that other centers can implement and adapt it. The secondary aim is to present representative comparative outcomes between infants receiving CNC and a historical cohort managed with routine nursing care, focusing on early growth and bilirubin clearance as primary outcomes and on cholangitis, rehospitalization, and parental satisfaction as secondary outcomes. By integrating protocol description with illustrative data, this article seeks to provide both a practical template for implementation and an initial assessment of feasibility and potential clinical value.

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-identify all data before analysis and ensure that no personally identifiable information is disclosed in any reports or publications.

NOTE: Use this protocol to standardize continuity of nursing care (CNC) after Kasai portoenterostomy in infants with biliary atresia (BA). Apply the steps below to enroll eligible patients, organize and train the CNC team, prepare families for discharge, implement a structured 6-month follow-up schedule with remote monitoring, train and empower parents, prevent complications, and record and verify all data for quality control (see Figure 1 for the CNC workflow).

1. Patient enrollment

1. Inclusion criteria
   1. Confirm the diagnosis of BA using established clinical, laboratory, imaging, and intraoperative criteria.
   2. Restrict enrollment to infants aged ≤ 100 days at the time of Kasai portoenterostomy who are clinically stable at discharge following successful surgery.
   3. Summarize baseline demographic and clinical characteristics of all enrolled infants in Table 1.
2. Exclusion criteria
   1. Exclude infants with severe postoperative deterioration or an extremely poor near-term prognosis as judged by the multidisciplinary team.
   2. Exclude infants who are lost to follow-up during the planned 6-month observation period.
3. Enrollment procedure
   1. Within 24-48 h prior to planned discharge, jointly screen consecutive postoperative cases against the inclusion and exclusion criteria, using the attending pediatric surgeon and a senior CNC nurse.
   2. Explain the CNC program to parents or legal guardians and answer any questions. Obtain written informed consent from caregivers who agree to participate.
   3. Assign each eligible infant to the CNC protocol group and allocate a unique study ID. Use historical cases managed between 2017 and 2019 with routine nursing care as the control group.
   4. Record baseline information (study ID, date of birth, sex, surgery date, discharge weight, total bilirubin, and documented postoperative complications) on "Form A-Enrollment and Baseline" (a template is provided as Supplementary File 1).
   5. Save each completed form as BA_CNC_[StudyID]_FormA.xlsx in a secure, access-controlled institutional folder.

2. Establishment of nursing team

1. Team composition
   1. Appoint the head nurse of neonatal surgery as the CNC coordinator.
   2. Include senior nurses with experience in hepatobiliary postoperative care and at least one attending pediatric surgeon as core members of the CNC team.
   3. Designate at least two nurses as follow-up nurses responsible for conducting remote contacts and completing follow-up documentation.
2. Training
   1. Before enrolling the first patient, organize a structured training session for all CNC team members. Cover CNC objectives, inclusion and exclusion criteria, the visit timeline, escalation criteria, documentation standards, and communication strategies.
   2. Provide printed or electronic copies of all CNC forms (Form A [Supplementary File 1], Form B [Supplementary File 2], Form C [Supplementary File 3], Form D [Supplementary File 4], Form E [Supplementary File 5]) and a copy of the CNC workflow (Figure 1) to each team member.
   3. Conduct at least one simulated follow-up call and one mock charting exercise for each follow-up nurse. Use a standardized checklist to evaluate performance and require a checklist completion rate ≥ 90% before allowing independent follow-up.
3. Role assignment
   1. Instruct the head nurse to coordinate individualized care plans, supervise adherence to the protocol, and oversee quality control of data and processes.
   2. Instruct designated follow-up nurses to conduct scheduled telephone or secure-messaging contacts, complete follow-up forms on the same day, and trigger escalation when predefined thresholds are met.
   3. Record attendance at training sessions, successful completion of simulations, and final role assignments on "Form B-Team and Training Log" (a template is provided as Supplementary File 2).

3. Discharge preparation

1. Wound and medication guidance
   1. Inspect the surgical wound together with the caregivers and demonstrate proper wound cleansing using sterile saline and clean gauze.
   2. Specify the recommended dressing-change frequency (for example, once daily or as directed by the surgeon) and list visual signs of infection (redness, warmth, swelling, discharge, or foul odor).
   3. Prepare a written and, if possible, illustrated medication guide listing each prescribed drug by its generic name, with dose expressed in mg/kg (or IU/kg), route of administration, dosing schedule, and common adverse effects that require medical attention.
   4. Ask caregivers to repeat each medication name, dose, and dosing schedule in their own words. Correct any misunderstandings and repeat the explanation until they can accurately describe the regimen.
   5. Document completion of wound and medication guidance on "Form C-Discharge Education Checklist" (a template is provided as Supplementary File 3).
2. Nutrition counseling
   1. Encourage exclusive breastfeeding whenever feasible and provide specific advice on feeding positions, frequency, and recognition of adequate intake.
   2. For formula-fed infants, recommend an appropriate formula enriched in medium-chain triglycerides when indicated and advise caregivers to provide small, frequent feeds.
   3. Explain that expected early-infancy weight gain is approximately 20-30 g/day, allowing for clinical judgment, and instruct caregivers to record daily feeding volume and any feeding difficulties in a simple home log.
   4. Confirm that caregivers understand how to monitor weight and feeding status and document this understanding on "Form C-Discharge Education Checklist."
3. Complication awareness
   1. Educate families about common warning signs, including recurrent or worsening jaundice, fever, acholic (clay-colored) stools, vomiting, poor feeding, abdominal distension, and lethargy.
   2. Provide an illustrated stool-color reference card and a home temperature log sheet, and instruct caregivers to record stool color and temperature at least once daily during the first month after discharge.
   3. Ask caregivers to describe what actions they will take if they observe any warning signs and correct misconceptions immediately.
   4. Document completion of complication-awareness education and obtain caregiver signatures on "Form C-Discharge Education Checklist."

4. Follow-up schedule

1. Follow-up timeline
   1. Plan a structured follow-up for 6 months after discharge. Schedule clinic or tele-clinic assessments at 1 week, 1 month, 3 months, and 6 months post-discharge (Figure 1).
   2. Schedule interim remote check-ins weekly during months 0-3 and biweekly during months 4-6.
   3. Provide caregivers with a printed or electronic schedule that lists all planned visits and remote contacts.
   4. Summarize weight outcomes for each time point in Table 2 after completing follow-up.
2. Remote monitoring
   1. At each scheduled remote contact, use a hospital-approved secure messaging platform or telephone to collect data on current weight, stool color, presence or absence of fever, caregiver-reported jaundice trajectory (improving, stable, or worsening), feeding status, and medication adherence.
   2. Instruct caregivers to weigh the infant at least once per week using the same calibrated scale whenever possible and to report the measured value in kilograms with one or two decimal places.
   3. Ask caregivers to send stool photographs when stool color is difficult to classify, and compare them with the stool-color reference card.
   4. Attempt contact at least twice if the first attempt fails, using different times of day where possible. If contact is missed on two consecutive scheduled attempts, initiate outreach by alternative telephone numbers or, where available, via community health workers. Document all attempts and outcomes.
   5. Record each remote contact (date, mode of contact, reported data, advice given, and any escalation) on "Form D-Weekly Remote Follow-up" (a template is provided as Supplementary File 4).
   6. Provide detailed operational definitions and measurement methods for remote-monitoring variables in Table 3.
3. Data documentation
   1. Transcribe all entries from Forms A-E into the hospital's electronic follow-up forms on the same day as the contact.
   2. Save each updated follow-up record as BA_CNC_[StudyID]_YYYYMMDD_Followup.xlsx in the secure institutional database.
   3. Restrict database access to authorized study staff only and enable weekly automated backups.
   4. Verify successful backup completion at least once per week and record this verification in a data-management log under the oversight of the head nurse.

5. Parental training and empowerment

1. Symptom recognition and escalation
   1. Define escalation thresholds as fever ≥ 38.0 °C, new or worsening jaundice, acholic stools, significant abdominal pain or distension, markedly reduced appetite, nausea or vomiting, or any sudden change in overall condition.
   2. Instruct caregivers to contact the CNC nurse within 12 h if any escalation threshold is met and to seek same-day emergency medical evaluation if fever or acholic stools occur.
   3. During each remote or in-person follow-up, review recent symptoms with caregivers and reinforce the escalation thresholds and response actions (see Table 4 and the escalation branch in Figure 1).
2. Daily care practices
   1. Demonstrate age-appropriate skin, oral, and wound-care routines and show caregivers how to keep the peristomal and perianal areas clean and dry.
   2. After surgical clearance, teach caregivers simple passive and active limb movements appropriate for the infant's age to promote motor development.
   3. Ask caregivers to perform a return demonstration of daily care routines and exercises, and provide corrective feedback until they perform the tasks correctly.
   4. Record completion of daily care training and caregiver competency on "Form E-Caregiver Competency and Support Plan."
3. Psychological support
   1. Encourage caregivers to share caregiving responsibilities among family members and to schedule regular rest periods to prevent exhaustion.
   2. Inform families about available psychological or social support services and provide contact information for a hospital support line or counseling service if available.
   3. Document the agreed support plan and any identified psychosocial needs on "Form E-Caregiver Competency and Support Plan" (a template is provided as Supplementary File 5).

6. Complication prevention protocol

1. Education on cholangitis and other complications
   1. Explain, in clear nontechnical language, the typical causes and manifestations of cholangitis after Kasai portoenterostomy, using simple drawings or printed illustrated guides when available (Figure 1, step 1).
   2. Emphasize that early recognition and treatment of cholangitis can improve long-term outcomes and that caregivers should not delay seeking medical attention when warning signs appear.
2. Preventive measures
   1. Advise families to minimize the infant's exposure to individuals with respiratory or gastrointestinal infections, especially in the first months after surgery.
   2. Instruct caregivers to seek medical evaluation promptly for upper-respiratory symptoms or feeding difficulties in the infant.
   3. Administer prophylactic medications or antibiotics only under explicit orders from the pediatric surgeon, and document the indication, dose, and duration in the medical record.
3. Scheduled check-ups
   1. Reinforce the importance of attending in-person visits at 1, 3, and 6 months for clinical examination and laboratory testing.
   2. If a visit is missed, contact the family within 24-48 h and reschedule the appointment within 7 days whenever possible.
   3. Aim for a visit attendance rate ≥ 90% and document reasons for missed visits and any actions taken to improve adherence.

7. Data recording and quality control

1. Documentation
   1. Instruct follow-up nurses to enter all follow-up results into the electronic system on the day of contact.
   2. Flag any late entries in the system and require the head nurse to review and countersign these records after verifying accuracy.
   3. Ensure that the data flow follows the steps outlined in Figure 1 (Step 7).
2. Verification
   1. Assign two nurses who are not directly responsible for the patient's routine follow-up to verify each record weekly.
   2. During verification, check each record for completeness (no missing key variables), internal consistency (dates, units, medication doses), and logical coherence (for example, weight changes versus reported feeding).
   3. Lock verified records before analysis and maintain an audit trail of any corrections, including date, reason, and person responsible.
3. Laboratory measurement and data storage
   1. At scheduled in-person visits and whenever escalation criteria are met, arrange blood sampling for total bilirubin (TBil) and other liver function tests according to institutional practice.
   2. Measure TBil using a fully automated biochemical analyzer that employs the diazo method, as specified in the Table of Materials.
   3. Calibrate the analyzer according to the manufacturer's recommended schedule and log calibration and internal quality-control results in the laboratory record.
   4. Enter TBil results (µmol/L) into the CNC database on the same day and link each value to the corresponding study ID and visit date.
4. Data security and backup
   1. De-identify all datasets by removing names and direct identifiers and replacing hospital IDs with study IDs before performing any analysis.
   2. Store the master dataset in a secure, access-controlled institutional database with weekly automated backups.
   3. Confirm successful backup completion at least once per week and document this confirmation.
   4. Record parental satisfaction data in the database and summarize satisfaction rates and free-text feedback in Table 5 for ongoing quality improvement.

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.