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Health-related quality of life, cognitive functioning and behaviour problems in children with Langerhans cell histiocytosis.

BACKGROUND: This study was designed to evaluate generic and disease-specific health-related quality of life (HRQoL), cognitive functioning and behaviour problems of children with Langerhans Cell Histiocytosis (LCH). Furthermore, we investigated which medical determinants and social demographic factors were predictive for HRQoL, cognitive functioning and behavioural problems.

PROCEDURE: In this cross-sectional case-control study 24 children ranging from 7 to 17 years of age were administered a HRQoL questionnaire, cognitive tests and behaviour ratings. In addition, a disease-specific HRQoL measure was developed and tested. Results were compared to a reference group consisting of healthy peers and to proxy-ratings by parents and teachers.

RESULTS: Children with LCH reported a lower physical HRQoL than the reference group (P
CONCLUSIONS: HRQoL is affected in children with LCH, especially in older children. Children with LCH show more internalising problem behaviour than their peers. Teachers are important additional informants about behaviour problems.

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