COSMIN database

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.
DOI:
10.1111/j.1365-2648.2007.04333.x
URL:
https://www.ncbi.nlm.nih.gov/pubmed/17627625
Journal:
J Adv Nurs
issn:
0309-2402 (Print)
Publication year:
2007
pages:
197-220
General health perceptions / HRQoL:
Health-related quality of life
Age:
Children (0-18)
Disease:
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
PRO / non-PRO:
Non-patient Reported Outcome
Patient Reported Outcome
Type of measurement instrument:
1 - Questionnaires
2 - Interviews
6 - Clinical rating scales
Instrument:
AUQEI - Autoquestionnaire Qualité de Vie Enfant Imagé
CHSI - Child Health Status Index for Ontario children
FS II(R) - Functional Status II (R)
HSCS-PS - Health Status Classification System Pre-school
HUI-2 - Health Utilities Index Mark 2
HUI-3 - Health Utilities Index-Mark 3
HUI - Health Utilities Index
ITQoL - Infant Toddler Quality of Life Questionnaire
Kiddy-KINDL
NHIS - National Health Interview Survey
PedsQL 4.0 Generic Core Scales - Pediatric Quality of Life Inventory Generic Core Scales
QoL in Children in Nordic Countries
QUALIN - Infant Quality of Life
QWB - Quality of Well-Being Scale
RAND - RAND Health Insurance Experiment I & II
TAPQOL - Netherlands Organization for Applied Scientific Research Academic Medical Center-Preschool Children Quality of Life   [see: ZUYD (NL)]
TedQL.2
WCHMP - Warwick Child Health & Morbidity Profile