Health-related quality of life measurement in children and adolescents in Ibero-American countries, 2000 to 2010

Abstract

Objectives: To analyze the characteristics of instruments designed to assess the health-related quality of life (HRQOL) in children, developed or adapted from 2000 to 2010 in Argentina, Chile, Mexico, Spain, and Uruguay.

Methods: The protocol-led literature review included database searching (e.g., Medline, ISI Science Citation Index) and manual searching to retrieve studies focused on measures of HRQOL, health status, or well-being addressed to children and adolescents. Country-specific filters were applied to identify studies carried out in the participating countries. The characteristics of the instruments and type of studies were analyzed. Descriptive characteristics and psychometric properties were analyzed following the guidelines of the Scientific Advisory Committee of the Medical Outcomes Trust.

Results: Ninety-nine documents were included. Thirty-one questionnaires were identified, 24 instruments were adapted, and the psychometric properties of 20 HRQOL instruments were reported in the study period. There was substantial variability in the number and characteristics of the dimensions included. Reliability was generally acceptable, and the majority of instruments provided data on internal consistency (n = 18) and, to a lesser extent, on test-retest reliability (n = 12). Nearly all studies reported construct validity, but only four analyzed sensitivity to change.

Conclusions: There is a scarcity of instruments to measure HRQOL of children and adolescents in the countries analyzed. Certain psychometric characteristics have been reasonably well tested, but others, most notably sensitivity to change, have not been tested in most instruments. Extension of this study to other Latin American countries would help to further identify gaps in this area and promote the use of HRQOL measurement in children and adolescents in Spanish-speaking cultures.