Evaluation of life quality for children infected by HIV: validation of a method and preliminary results.

The authors discuss a method developed for the evaluation of quality of life (QoL) of children infected by HIV. The method consists of several questionnaires intended for different evaluators (doctor, nurse, psychologist, and parents), and for the infected child. The protocol was administered to 47 families (interviewed in five centers in the south of France). A descriptive overview of this population notes the state of health and autonomy of the children and parents, and reveals important social difficulties within and beyond the family unit for 75% of the families. The results obtained furnish points to consider in the planning of psychosocial support systems. The reactions of the evaluators to the questionnaires as well as other elements of validation are presented: level of responses (acceptance), internal consistency, agreement between evaluators, and reliability and definition of the main indicators for QoL for the children. Questionnaires were simplified for a second survey so as to test the sensitivity of the method to time variations, improve acceptability, and test validity for the evaluation of QoL. The authors hope their method will interest specialized teams in the fields of therapeutic research and/or psychosocial support.