COSMIN database

Assessment of quality of life in children and youth with autism spectrum disorder: a critical review

Ikeda, E., Hinckson, E., and Krageloh, C.
PURPOSE: To review the use of quality of life (QOL) measures utilised in children and youth with autism spectrum disorder (ASD).

METHODS: Relevant articles were identified through database searches using MEDLINE, CINAHL Plus with Full Text and SPORTDiscus with Full Text via EBSCO Health Database, PsycINFO and ProQuest Health and Medicine (from 2000 to May 2013). Original research articles were included that measured QOL in children and youth with ASD aged 5-20 years. Searches were limited to articles from peer-reviewed journals, in English or German, and those available in full text.

RESULTS: The search identified 1,165 titles and 13 met the inclusion criteria. The review identified a number of QOL measures used in children and youth with ASD, with the most common one being the Pediatric Quality of Life Inventory (PedsQL). QOL measures using self-reports were uncommon, and the reliability and validity of QOL measures were not sufficiently reported for this population. Large discrepancies in QOL scores were found between self-reports and proxy-reports. Despite the differences in study design and methodological quality, there was consistency in the results among studies; children and youth with ASD provided lower QOL scores, particularly for social domains, compared to their healthy counterparts.

CONCLUSIONS: The PedsQL is likely to be an appropriate QOL measure for use in children and youth with ASD. Future research should focus on examining the appropriateness, reliability and validity of QOL self-reports for use in this population.
Qual Life Res
1573-2649 (Electronic)
Publication year:
Overall quality of life:
Overall quality of life
Children (0-18)
Mental and behavioural disorders and related symptoms
PRO / non-PRO:
Non-patient Reported Outcome
Patient Reported Outcome
Type of measurement instrument:
1 - Questionnaires
6 - Clinical rating scales
ASHA QCL - American-Speech-Language-Hearing-Association (ASHA) Quality of Communication Life scale
CHIP-CE - Child Health and Illness Profile-Child Edition
HUI-3 - Health Utilities Index-Mark 3
ILK-MARSYS - Inventar zur Erfassung der Lebensqualität bei Kindern und JugendlicheneMarburger System zur Qualitätssicherung und Therapieevaluation
Instrument Quality of Life
PedsQL 4.0 Generic Core Scales - Pediatric Quality of Life Inventory Generic Core Scales (versions: PedsQL 4.0 TODDLER; PedsQL 4.0 YOUNG CHILD; PedsQL 4.0 CHILD; PedsQL 4.0 TEENAGER)
QWB-SA - Quality of Well Being Self-administered Scale
VSP-A - Vecú de Santé Percué Adolescent
WHOQOL-BREF - World Health Organization Quality of Life questionnaire–Abbreviated Questionnaire [alias: WHO-QOL BREF]