Biliary atresia: neurodevelopment and quality of life

Lyan Rodijk


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    Biliary atresia is a severe liver disease, manifesting as cholestatic jaundice within the first weeks after birth. It is the most common cause of end-stage liver failure in children and the most frequent indication for pediatric liver transplantation worldwide. The overall goal of this thesis was to assess the impact of biliary atresia on neurodevelopment in children, and the quality of life of both children and their family members. It is essential to identify problems in neurodevelopmental or psychosocial outcomes early, to start targeted intervention at a moment with the highest chance of therapeutic success. The data demonstrate that children face ongoing challenges as a result of biliary atresia, especially concerning motor skills and physical functioning. Our findings warrant, and form the basis for, the development of a standardized neuropsychological screening and targeted intervention program to improve the prognosis of these vulnerable patients. For parents, psychological screening is warranted, especially for mothers in the first years after biliary atresia diagnosis. Parental support might not only be beneficial for parental wellbeing, but may also improve the neurodevelopment, emotional outcomes, and health-related quality of life of their children. Ideally, adequate screening and targeted intervention will allow children with biliary atresia to exceed to their full potential and grow up to functional, independent, and lively adults who experience the least possible interference of their disease or treatments.
    Originele taal-2English
    KwalificatieDoctor of Philosophy
    Toekennende instantie
    • Rijksuniversiteit Groningen
    • Hulscher, Jan, Supervisor
    • Verkade, Henkjan, Supervisor
    • Bruggink, Janneke, Co-supervisor
    Datum van toekenning7-okt.-2020
    Plaats van publicatie[Groningen]
    Gedrukte ISBN's978-94-6416-104-5
    Elektronische ISBN's978-94-6416-118-2
    StatusPublished - 2020


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