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

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.

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.

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 available and could not be compared.

Weight gain
As reported in Table 2, discharge weight did not differ significantly between groups (P = 0.145). Weight gain since discharge, calculated as follow-up weight minus discharge weight, was greater in the CNC group at 1, 3, and 6 months (Mann-Whitney U test; all P < 0.01). These higher gains are consistent with better early nutritional recovery among infants managed under the CNC protocol.

Total bilirubin (TBil) levels
Table 3 shows TBil values measured by the diazo method at discharge and during follow-up. TBil at discharge did not differ significantly between groups (P > 0.05). At 1, 3, and 6 months, TBil levels were significantly lower in the CNC group than in controls (all P < 0.01), suggesting faster bilirubin clearance and earlier improvement in liver function in infants receiving CNC.

Cholangitis and rehospitalization
As summarized in Table 4, the CNC group had lower 6-month rates of cholangitis and rehospitalization than the control group, although these differences did not reach statistical significance (P > 0.05). The direction of these differences indicates a favorable trend that requires confirmation in larger, prospectively designed cohorts.

Parental satisfaction
Table 5 presents parental satisfaction outcomes. The overall satisfaction rate (proportion of caregivers reporting "very satisfied" or "satisfied") was significantly higher in the CNC group than in the control group (P = 0.035). Caregivers receiving CNC more frequently reported feeling supported and confident in managing home care, in line with the emphasis on structured education, scheduled follow-up, and caregiver empowerment in this protocol.

Figure 1: Continuity-of-nursing-care (CNC) workflow from inpatient preparation to post-discharge follow-up. Schematic diagram of the CNC pathway, beginning with inpatient assessment and discharge education, followed by weekly (months 0-3) and biweekly (months 4-6) remote monitoring and scheduled clinic visits at 1 week and at 1, 3, and 6 months after discharge. The figure also shows embedded parental training, predefined escalation thresholds (fever ≥ 38.0 °C, acholic stools, worsening jaundice, persistent vomiting), and final data verification and quality control steps. Please click here to view a larger version of this figure.

Table 1: Baseline demographic and clinical characteristics of infants in the CNC and control groups. Sex distribution, age at admission, and admission weight are presented for both groups. No statistically significant differences were observed between groups for these variables (all P > 0.05). Please click here to download this Table.

Table 2: Postoperative weight gain since discharge in CNC and control groups at 1, 3, and 6 months. Weight gain since discharge is calculated as follow-up weight minus discharge weight and is presented as median (25th-75th percentile). Between-group comparisons (CNC vs control) were performed using the Mann-Whitney U test, and Z- and P-values are reported for each time point. Please click here to download this Table.

Table 3: Postoperative total bilirubin (TBil) levels in CNC and control groups. TBil values (µmol/L) measured by the diazo method on an automated biochemical analyzer are presented as median (interquartile range). Between-group comparisons at each time point were performed using the Mann-Whitney U test. TBil levels were significantly lower in the CNC group than in the control group at all follow-up time points (all P < 0.01). Please click here to download this Table.

Table 4: Incidence of cholangitis and rehospitalization within 6 months after Kasai procedure. The table reports the number of infants experiencing at least one episode of cholangitis and at least one rehospitalization within 6 months after discharge in the CNC and control groups. Group differences were assessed using the chi-square test; rates were lower in the CNC group but did not reach statistical significance (P > 0.05). Please click here to download this Table.

Table 5: Parental satisfaction in CNC and control groups at 6 months. Parental satisfaction is summarized according to predefined categories and as an overall satisfaction rate, defined as the proportion of caregivers reporting "very satisfied" or "satisfied." Group differences were compared using the chi-square test. The CNC group showed a significantly higher overall satisfaction rate than the control group (P = 0.035). Please click here to download this Table.

Supplementary File 1: Template for Form A-Enrollment and baseline. Please click here to download this File.

Supplementary File 2: Template for Form B-Team and training log. Please click here to download this File.

Supplementary File 3: Template for Form C-Discharge education checklist. Please click here to download this File.

Supplementary File 4: Template for Form D-Weekly remote follow-up. Please click here to download this File.

Supplementary File 5: Template for Form E-caregiver competency and support plan. Please click here to download this File.

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 life¹². Cholangitis after Kasai portoenterostomy is common, with multifactorial pathogenesis involving surgical trauma, altered biliary anatomy, immune dysfunction, and ascending bacterial infection^13,14. Each episode increases infant suffering and may accelerate hepatic injury and disease progression, which makes prevention and early management of cholangitis a central focus of pediatric hepatobiliary care¹⁵.

Conventional nursing models in this setting often concentrate on inpatient care and short-term discharge instructions but provide limited structure for long-term follow-up and complication management^16,17. Once infants return home, families may lack timely professional guidance when new symptoms arise, and limited caregiver knowledge of home care can contribute to inappropriate practices and heightened risk¹⁸. In this context, continuity of nursing care (CNC) offers a way to extend structured support from hospital to home, combining standardized discharge preparation, scheduled follow-up, remote monitoring, and targeted caregiver training^19,20.

Within this protocol, infants enrolled in the CNC group showed greater postoperative weight gain at 1, 3, and 6 months compared with historical controls. While causality cannot be established in this retrospective design, these differences are consistent with the idea that CNC, by providing regular nutritional counseling and early troubleshooting of feeding problems, may support better early growth and nutritional recovery²¹. Similarly, total bilirubin levels were lower in the CNC group at each follow-up point, suggesting faster bilirubin clearance and earlier improvement in liver function²². Taken together, these representative outcomes illustrate that a structured CNC program can be implemented in routine practice and may help align nursing interventions more closely with infants' evolving clinical needs.

The CNC model described here relies on a multidisciplinary team to deliver comprehensive and individualized care plans²³. At discharge, nurses provide structured, face-to-face guidance that covers wound care, medication administration, and key elements of postoperative home management. Dietary recommendations are tailored to the infant's age and feeding mode, with an emphasis on small, frequent feeds and close monitoring of weight gain²⁴. A detailed 6-month follow-up schedule is then implemented, combining in-person clinic visits with regular telephone or secure messaging contacts to maintain continuous monitoring. These contacts allow nurses to perform systematic assessment, reinforce education, and correct misunderstandings in real time.

Educational components of the protocol place particular emphasis on cholangitis awareness. Parents are trained to recognize early warning signs-such as fever, worsening jaundice, or acholic stools-and to seek medical assistance promptly²⁵. Daily-care skills, including wound management and hygienic practices, are reinforced through return demonstrations, which help reduce infection risk and foster caregiver confidence. From a practical standpoint, this structured, stepwise approach provides a template that other centers can adapt to their own staffing patterns and communication platforms.

The CNC model also appears to influence families' subjective experiences. In this cohort, the CNC group achieved a higher parental satisfaction rate than the control group, with caregivers more often reporting that they felt supported and better equipped to care for their infants²⁶. Although satisfaction is a subjective outcome and sensitive to context, this finding aligns with the qualitative impression that repeated contact with a consistent nursing team helps build trust, reduce anxiety, and encourage shared responsibility for long-term management.

In summary, infants with BA remain vulnerable to late cholangitis and other complications after Kasai portoenterostomy. The CNC protocol described in this article provides a reproducible framework that integrates structured discharge preparation, scheduled follow-up, remote monitoring, complication-focused education, and caregiver empowerment. The illustrative outcomes in growth, bilirubin clearance, complications, and satisfaction suggest that such a model is feasible in a real-world setting and may offer clinical and experiential benefits for infants and their families. At the same time, these results should be interpreted as preliminary and hypothesis-generating rather than definitive evidence of efficacy.

This protocol evaluation has several important limitations. First, it is a single-center, retrospective study with a modest sample size and a historical control group. The use of historical rather than contemporaneous controls introduces the possibility of temporal confounding, as incremental changes in surgical technique, perioperative care, or institutional practices over time may have influenced outcomes independent of CNC implementation²⁷. Second, although age at admission and discharge weight were similar between groups, other prognostic variables-such as preoperative cholestasis severity, hepatic fibrosis or stiffness, details of the surgical approach, and virologic factors-were not consistently recorded for both cohorts and therefore could not be adjusted for. Residual confounding from these unmeasured factors cannot be excluded.

Third, the 6-month follow-up period, while relevant for early outcomes, does not capture longer-term endpoints such as native liver survival or the cumulative burden of cholangitis episodes. Fourth, parental satisfaction was assessed using the hospital's routine nursing satisfaction questionnaire rather than a BA-specific, validated scale, and the timing and mode of data collection differed between the CNC and historical groups. These features may introduce measurement variability and potential response or recall bias.

Future work should therefore build on this protocol in prospective, multicenter designs with larger sample sizes, standardized collection of key prognostic variables, and longer follow-up. Randomized or well-matched controlled studies could more rigorously evaluate the impact of CNC on clinical outcomes such as cholangitis incidence, rehospitalization, growth, and native liver survival, as well as on patient-reported and caregiver-reported outcomes. At the same time, qualitative studies exploring caregiver experiences may help refine educational content and communication strategies. In this sense, the present article is intended primarily to provide a detailed, reproducible description of the CNC protocol and to offer initial data supporting its feasibility and potential value, while acknowledging the need for more definitive evaluation.