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Social and Educational Outcomes in Patients With Biliary Atresia: A Systematic Review
Emma C Alexander1,2, William Greaves3,4, Hrisheekesh J Vaidya4
1Paediatric Liver, GI and Nutrition Centre and Mowatlabs, Kings College Hospital.
Insights
Biliary atresia (BA) patients show lower school functioning than peers, with no difference between native liver survivors and those post-liver transplant. Adults with BA have high employment rates, but routine psychosocial assessments are recommended for improved evidence.
Area of Science:
- Pediatric Gastroenterology and Hepatology
- Transplant Surgery
- Social Sciences in Medicine
Background:
- Biliary atresia (BA) is a leading cause for pediatric liver transplantation.
- Understanding the long-term social outcomes of BA patients is crucial for comprehensive care.
- Existing data on social outcomes are often limited by study design and sample size.
Purpose of the Study:
- To systematically review the educational, employment, and family outcomes of patients with biliary atresia.
- To assess the social functioning of individuals with BA compared to general populations.
- To identify gaps in current research and inform future study directions.
Main Methods:
- Systematic review of multiple databases (Medline, EMBASE, etc.) and reference searching.
- Inclusion of 51 studies (41 cohort, 10 cross-sectional) with 4631 participants from 16 countries.
- Quality assessment using National Heart, Lung and Blood Institute scoring.
Main Results:
- BA patients exhibited lower school functioning scores compared to controls; no significant difference was observed between native liver survivors and post-liver transplant groups.
- A wide range of additional educational support was required (2%-48%).
- Adult BA patients demonstrated high employment rates (60%-100%), and social functioning was comparable to healthy controls in most comparisons (8/11).
Conclusions:
- Social outcomes for BA patients, particularly school functioning, are impacted, necessitating psychosocial support.
- Liver transplantation does not appear to alter school functioning compared to native liver survival.
- Further multi-center research is recommended to enhance the quality of evidence regarding social outcomes in BA.
Objectives:
To systematically review the social outcomes of patients with biliary atresia (BA), including educational, employment and family outcomes.
Methods:
We conducted a systematic review of Medline, EMBASE, Global Health, Maternity and Infant Care Database, supplemented by reference searching. National Heart, Lung and Blood Institute scoring was conducted for quality assessment. The PROSPERO registration ID was CRD42020178846.
Results:
Fifty-one studies were included (41 cohort, 10 cross-sectional), including 4631 participants across 16 countries. Cohorts were BA post-liver transplant (LT) (18 studies), native liver survivors (NLS) (16 studies), mixed (13 studies) and four other cohorts. Outcomes covered; education (n = 35), employment (n = 16), family outcomes (n = 22), and social functioning (n = 22). BA patients had lower school functioning scores than controls, with no difference between NLS versus post-LT. Between 2% and 48% of children required additional educational support. Between 60% and 100% of adult patients with BA were employed. Pregnancies were described in 17 studies, with small samples, and some noted complications. Social functioning scores were similar to healthy controls in 8 of 11 comparisons.
Conclusions:
Despite BA being the primary indication for liver transplantation in childhood, social outcomes for children and adolescents are predominantly reported in non-controlled, single-centre survey-based studies. School functioning is lower compared to peer groups, with no evidence of a difference for those having a liver transplant. We recommend routine psychosocial assessment of these patients during follow-up, alongside multi-centre collaborations, to maximise the quality of evidence for future patients.
