Developmental medicine and child neurology
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Dev Med Child Neurol · Mar 2009
Quality of life of adolescents with cerebral palsy: perspectives of adolescents and parents.
Quality of life (QOL) has emerged over the past 20 years as an outcome for measuring the effectiveness of health-improvement interventions. The Cerebral Palsy Quality of Life Questionnaire for Children (CPQOL-Child) is well regarded and now integrated into research internationally. We describe the results of qualitative research, using grounded research in which we aimed to identify domains of QOL for adolescents with cerebral palsy (CP) from adolescent and parent perspectives to guide the development of an adolescent version. ⋯ Questions included: 'What do you think is important to your (child's) QOL?' and 'How does CP impact on your (child's) life?' Fifteen themes were identified, including domains related to health issues in adolescence, participation, education, specific CP-related issues (pain and discomfort, communication), family issues, practical issues (financial resources), and changes associated with adolescence (sexuality, independence). The composition of these QOL domains reflects the developmental concerns of adolescents with CP, adding to the views of children, and strongly supports adolescent participation in the development of self-reported well-being and QOL measures. Many of the domains are consistent with child reports of QOL and thus it appears feasible and valid to develop a measure that will be transferable across childhood and adolescence.
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Dev Med Child Neurol · Jul 2008
Delays in investigation and management of acute arterial ischaemic stroke in children.
The aim of this study was to investigate the timing and course of investigation and diagnosis in children with acute arterial ischaemic stroke (AIS) and factors influencing this using a retrospective case-note review. Participants comprised 50 children (26 males, 24 females; median age at presentation 3 y 4 mo, range 2 mo-16 y 10 mo). Although all had brain infarction, symptoms resolved in less than 24 hours in 21 children (transient ischaemic attack [TIA] group). ⋯ Our results show that most children with acute AIS are seen within 6 hours but definitive imaging and specialist assessment take more than 24 hours. Time to diagnosis is significantly longer in children with TIA (p=0.001). Trials of acute treatment being designed for childhood AIS will require rapid transfer to tertiary centers and access to definitive neuroimaging, but these data suggest that this will challenge existing practice.