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abstractpubmed· Abstract 2021· item PMID:34560722

Social and Educational Outcomes in Patients with Biliary Atresia: A Systematic Review. 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. NHLBI scoring was conducted for quality assessment. The PROSPERO registration ID was CRD42020178846. RESULTS: 51 studies were included (41 cohort, 10 cross-sectional), including 4,631 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 vs post-LT. Between 2% and 48% of children required additional educational support. Between 60-100% 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 8/11 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.