Quality of Life and Parental Worrying in A National Cohort of Biliary Atresia Children Living with Their Native Livers.

Objectives: To evaluate health related quality of life (HRQoL) and parental distress in a national cohort of children with biliary atresia (BA) with their native livers in relation to BA complications and HRQoL of normal population controls. Methods: We invited all Finnish children with BA surviving with their native livers at age 2-18 years to participate in 2009 and in 2014. Parents filled the PedsQL proxy questionnaire, a survey of their child's health and evaluated parental distress on a visual analogue scale from 0 to 7. Overall participation rates were 80% (12/15) for the longitudinal and 83% (20/24) for the cross-sectional assessment. A control population of 324 children matched for age and sex was randomly picked, and 108 (33%) participated. Results: Overall, patients and controls had comparable HRQoL. Patients reported significantly lower scores for school functioning (p = 0.004) as depicted by missing school or daycare due to hospital visits. Eighty-five percent of parents reported extreme worry (7.0) when hearing their child's BA diagnosis. At 6 years after diagnosis, parents reported significantly less worry: median score 3.8 (interquartile range 3.0-5.4; p

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