Kwaliteit van leven van Nederlandstalige kinderen met een HIV-infectie of aids

Objectiv; aims of the study were to compare the quality of life of HIV-infected children with a normative sample, to assess the agreement between parent and self-report and to inquire parents about the information they had given to their child about the diagnosis. Method: it was possible to determine health related quality of life with a proxy and a self-report measure of 11 children with HIV or aids treated in the Emma Children's Hospital AMC. For the proxy measure the TNO/AZL Quality of Life questionnaire (TACQOL) was used which determines a health related quality of life score. For the children the Dutch Children's AZL/TNO Quality of Life questionnaire (DUCATQOL) was used. Result: both parents and children reported lower levels of quality of life on several domains of the quality of life questionnaires. No agreement was found between parental report of quality of life and self-report of the children. Six of the parents reported having informed their children about the diagnosis. Parents stated the need to turn to their physician to help them to inform their child. Conclusion: HIV infected children and their parents are a vulnerable group and need intensive support.