Aim: This paper is a report of a systematic review to assess the adequacy of measures evaluating generic health-related quality of life outcomes in children less than 5 years old.
Background: Evaluating generic health-related quality of life outcomes in children is important to assess the effectiveness of interventions, nursing care and services.
Methods: A methodological systematic review was carried out for the period 1980-2005 in accord with the UK Centre of Reviews and Dissemination guidelines on systematic reviews. We searched multiple electronic databases, hand-searched key texts, and contacted investigators. We included all English language publications describing primary empirical research of generic health-related quality of life, health status, functional status or wellbeing measures, with published psychometric evidence. All measures (proxy and/or self-complete) for use in children under 5 years were included; single dimension measures were excluded.
Results: Seventy-six papers (70 studies) referring to 16 generic health-related quality of life measures met our inclusion criteria. None of the 16 measures were adequate in terms of their conceptual content or psychometric criteria; quality scores were poor (0-8). No current, generic health-related quality of life measure is both psychometrically and conceptually robust, although the Health Utilities Index has the most comprehensive psychometric data published. However, not all dimensions of health are assessed, with little evidence of reliability in children under 5 years of age.
Conclusion: There is a need to develop empirically robust and conceptually comprehensive health-related quality of life measures, particularly in the context of proxy-completion measures for very young children.