COSMIN database

Health-related quality-of-life measures for long-term follow-up in children after major trauma

Janssens, L., Gorter, J. W., Ketelaar, M., Kramer, W. L., and Holtslag, H. R.
OBJECTIVE: Our objective was to review measures of health-related quality of life (HRQL) for long-term follow up in children after major trauma and to determine the measures that are suitable for a large age range, reliable and valid, and cover a substantial amount of the domains of functioning using the International Classification of Functioning, Disability, and Health (ICF) of the World Health Organization (WHO).

METHODS: The Medline and EMBASE databases were searched in all years up to October 2007 for generic HRQL measures suitable for children aged 5-18 years old and validated in English or Dutch. Measures were reviewed with respect to the age range for which the measure was suitable and reliability, validity, and content related to the ICF.

RESULTS: The search resulted in 1,235 hits and 21 related articles. Seventy-nine papers met the inclusion criteria, describing in total 14 measures: Child Health and Illness Profile Adolescent and Child Edition (CHIP-AE/CE), Child Health Questionnaire Child and Parent Forms (CHQ-CF87/PF50/PF28), DISABKIDS, Functional Status II (FS II)(R), Health Utilities Index Mark 2 (HUI 2), KIDSCREEN 52/27, KINDL, Pediatric Quality of Life Inventory (PedsQL), TNO Institute of Prevention and Health and the Leiden University Hospital (TNO-AZL), TNO-AZL Children's Quality Of Life (TACQOL), and Youth Quality of Life Instrument--Research Version (YQOL-R). Measures that were suitable for a large age range were CHQ-PF50/PF28, DISABKIDS, FS II(R), HUI 2, KIDSCREEN, PedsQL, and TACQOL. All measures had moderate to good psychometric properties, except for CHQ-PF50/PF28, KINDL, and TACQOL, which had either low internal consistency or bad test-retest reliability. The measures that covered more than six chapters of the ICF domains were CHIP-AE/CE, CHQ-CF87/PF50, DISABKIDS, KIDSCREEN-52, PedsQL, and TACQOL.

CONCLUSIONS: DISABKIDS, KIDSCREEN 52, and PedsQL are suitable for long-term follow-up measurement of HRQL in children after major trauma. They cover a large age range, have good psychometric properties, and cover the ICF substantially.
Qual Life Res
0962-9343 (Print)
Publication year:
Symptom status:
Cognitive/mental state
Emotional state
Physical state
Functional status:
Cognitive/mental functioning
Physical functioning
Role functioning
Social functioning
General health perceptions / HRQoL:
Health-related quality of life
Children (0-18)
Injury, poisoning and certain other consequences of external causes
PRO / non-PRO:
Non-patient Reported Outcome
Patient Reported Outcome
Type of measurement instrument:
1 - Questionnaires
6 - Clinical rating scales
CHIP-AE - Child Health and Illness Profile-Adolescent Edition
CHIP-CE - Child Health and Illness Profile-Child Edition
CHQ-CF87 - Child Health Questionnaire-Child Form 87
CHQ-PF28 - Child Health Questionnaire Parent Form 28
CHQ-PF50 - Child Health Questionnaire – Parent Form 50
FS II(R) - Functional Status II (R)
HUI-2 - Health Utilities Index Mark 2
KIDSCREEN-27 items - Health Related Quality of Life Questionnaire for Children and Young People and their Parents-27 items
KIDSCREEN - 52 items - Health Related Quality of Life Questionnaire for Children and Young People and their Parents-52 items
PedsQL - Pediatric Quality of Life Inventory
TACQOL - Netherlands Organization for Applied Scientific Research Academic Medical Center-Child Quality of Life   
YQOL-R - Youth Quality of Life Instrument-Research version