Objective To determine health-related quality of life (HRQoL) in children and youth with acquired brain injury (ABI) two years post-injury and explore associated factors. Design Cross-sectional. Subjects Children and youth (n = 72; aged 6-22 years) with mild to severe ABI (87% mild). Methods The primary outcome measures self-reported and parent-reported HRQoL were assessed with the Paediatric Quality of Life Inventory (PedsQL) and compared with age-appropriate reference values of the Dutch population. Spearman correlation coefficients (Rs) were used to explore relationships between HRQoL and sociodemographic and ABI characteristics, severity of impairments and presence of post-injury problems. Results Children and youth with ABI and the reference population had similar self-reported HRQoL. However, as reported by parents, children with ABI aged 6-7 years and youth aged 13-18 years had poorer HRQoL regarding psychosocial health. Children's post-injury cognitive, behavioural and social problems were moderately associated with poorer HRQoL, especially psychosocial health (Rs ≥ 0.40). Severity nor type of injury were associated with children's HRQoL. Conclusion Two years post-injury, in children and youth with mild to severe ABI, reported HRQoL is similar to that in the general population, whereas parents reported less favourable outcomes. Post-injury cognitive, behavioural and social problems require ongoing attention during long-term follow-up.

Additional Metadata
Keywords Brain injury, Children, Long-term outcome, Quality of life, Young adults, Youth
Persistent URL dx.doi.org/10.1016/j.ejpn.2015.09.003, hdl.handle.net/1765/87108
Journal European Journal of Paediatric Neurology
Citation
Ilmer, E.C, Lambregts, S.A.M, Berger, M.A.M, de Kloet, A.J, Hilberink, S.R, & Roebroeck, M.E. (2016). Health-related quality of life in children and youth with acquired brain injury: Two years after injury. European Journal of Paediatric Neurology, 20(1), 131–139. doi:10.1016/j.ejpn.2015.09.003