Adequacy of health-related quality of life measures in children under 5 years old: systematic review
Authors:
Grange, A., Bekker, H., Noyes, J., and Langley, P.
Abstract:
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.
Certain conditions originating in the perinatal period and related symptoms Certain infections and parasitic diseases and related symptoms Congenital malformations, deformations and chromosomal abnormalities and related symptoms Diseases of and symptoms related to the blood and blood-forming organs and certain disorders involving the immune mechanism Diseases of and symptoms related to the circulatory system Diseases of and symptoms related to the digestive system Diseases of and symptoms related to the ear and mastoid process Diseases of and symptoms related to the eye and adnexa Diseases of and symptoms related to the genitourinary system Diseases of and symptoms related to the musculoskeletal system and connective tissue Diseases of and symptoms related to the nervous system Diseases of and symptoms related to the respiratory system Diseases of and symptoms related to the skin and subcutaneous tissue Endocrine, nutritional and metabolic diseases and related symptoms External causes of morbidity and mortality Injury, poisoning and certain other consequences of external causes Mental and behavioural disorders and related symptoms Neoplasms and related symptoms Symptoms, signs and abnormal clinical and laboratory findings, not elsewhere classified
