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.