Quality of life measurement in paediatric and adolescent populations with HIV: a review of the literature.

PURPOSE: To review the quality and utility of currently available self-report generic quality of life (QOL) and health-related quality of life (HRQOL) measures for use with children and adolescents with human immunodeficiency virus and/or acquired immunodeficiency syndrome (HIV/AIDS). METHODS: Literature searches were conducted to identify QOL and HRQOL measures developed for, adapted for, or otherwise used with paediatric and adolescent populations with HIV/AIDS. The quality of measures (i.e. item generation techniques, instrument properties including reliability, validity and responsiveness) were compared and critically evaluated. RESULTS: Nineteen QOL/HRQOL measures were identified. Item content was generated from the respondent (adult) population in only eight (42%) measures. Seventeen (90%) measures reported internal reliability in the accepted range between 0.70 and 0.90 and four (21%) reported reproducibility statistics in this range. Although validity was reported for 19 (100%) measures, only six (32%) showed evidence for three or more properties, with construct validity being the most commonly reported aspect. The authors of eight (42%) measures reported evidence for responsiveness. CONCLUSIONS: While almost all measures reviewed demonstrated adequate psychometric properties, only one-third demonstrated all aspects of validity, and less than half demonstrated responsiveness. None included paediatric or adolescent populations with HIV/AIDS in their development, neglecting to obtain input from target respondents in item generation to determine what health-related and daily functioning factors are of importance to them. Despite noted limitations, the AUQUEI or the SWED-QUAL appear the best currently available generic measure, and the MQOL-HIV the preferred disease-specific measure, at least for use with older adolescents/young adults.

Exploring links between the concepts of Quality of Life and resilience.

This paper explores links between the concepts of Quality of Life (QoL) and resilience. First, the definitions of QoL and resilience are explored separately, emphasizing that both concepts have been criticized for a lack of theory with resulting problems in description, prediction and measurement. The similarities and differences are then considered between these two related psychological concepts-resilience and QoL. The need is identified for establishing a theoretical model of QoL, and how elements from resilience research can be beneficially integrated within such a model is discussed. Further empirical work is needed to explore explicitly the relationship between these two related psychological concepts, and establish how well resilience can help explain individual variation in QoL reports in young children.

A generic measure of Quality of Life for children aged 3-8 years: results of two preliminary studies.

Preliminary findings from the development of a new quality of life (QoL) measure for children aged 3-8 years are presented in two studies. Thirty-six children (5-6 years) completed a 10-item measure in Study 1, which included ratings of their abilities and 'happiness'. The children also completed an established QoL measure and 24 parents completed a proxy QoL measure. Preliminary support for the face and construct validity of the new measure is reported. There were correlations between the children's scores on the two measures (p < 0.05). However, child and parent scores were not correlated (p = 0.65). Twenty-four children (3-4 years) completed a modified version of the new QoL measure in Study 2, which consisted of 23 items. The internal reliability of the measure and the speed of children's responses allowed comparison of the efficacy of two response formats. Significant differences in speed were found in children's responses using different response formats, and differences in the internal consistency of the measure. Eighteen parents completed a proxy QoL measure, as in Study 1. Child and parent scores on the two measures were not correlated (p = 0.23). These studies highlight the difficulties in obtaining self-report QoL data from children below 5 years.