TY - JOUR
T1 - Psychometric Properties of the EQ-5D-Y-5L for Children With Intellectual Disability
AU - Downs, Jenny
AU - Norman, Richard
AU - Mulhern, Brendan
AU - Jacoby, Peter
AU - Reddihough, Dinah
AU - Choong, Catherine S.
AU - Finlay-Jones, Amy
AU - Blackmore, A. Marie
N1 - Publisher Copyright:
© 2024
PY - 2024/6
Y1 - 2024/6
N2 - Objectives: The EQ-5D-Y-5L is a generic preference-based measure of health-related quality of life for children. This study aimed to describe the distributional properties, test-retest reliability, and convergent validity of the EQ-5D-Y-5L in children with intellectual disability (ID). Methods: Caregivers of children with ID (aged 4 to 18 years) completed an online survey, including a proxy-report EQ-5D-Y-5L, the Quality-of-life Inventory-Disability, and disability-appropriate measures corresponding to the EQ-5D dimensions: mobility, self-care (SC), usual activities (UA), pain/discomfort (PD), and worry/sadness/unhappiness. Twenty-one participants repeated the EQ-5D-Y-5L a few weeks later. Test-retest reliability was computed using weighted kappa and intraclass correlation coefficients, and convergent validity using Spearman's and Pearson's correlation coefficients. Results: Caregivers of 234 children completed the survey, with <1% missing values. Only 1.7% reported “no problems” on all dimensions (11111). The dimensions with the lowest percentage of “no problems” were SC and UA (both 8%). Test-retest reliability coefficients were fair to substantial for 4 dimensions (weighted kappa .30 to .79) but low for PD and overall health, as measured by the visual analog scale (EQ-VAS). Convergent validity was strong (Spearman's correlation .65 to .87) for mobility, SC, and PD; moderate to strong for worry/sadness/unhappiness (.47 to .60) and the EQ-VAS (Pearson's correlation .49); and weak to moderate for UA (.21 to .52). Conclusions: Convergent validity was generally good; test-retest reliability varied. Children with ID had lower scores on SC and UA than other populations, and their EQ-VAS could fluctuate greatly, indicating poorer and less stable health-related quality of life.
AB - Objectives: The EQ-5D-Y-5L is a generic preference-based measure of health-related quality of life for children. This study aimed to describe the distributional properties, test-retest reliability, and convergent validity of the EQ-5D-Y-5L in children with intellectual disability (ID). Methods: Caregivers of children with ID (aged 4 to 18 years) completed an online survey, including a proxy-report EQ-5D-Y-5L, the Quality-of-life Inventory-Disability, and disability-appropriate measures corresponding to the EQ-5D dimensions: mobility, self-care (SC), usual activities (UA), pain/discomfort (PD), and worry/sadness/unhappiness. Twenty-one participants repeated the EQ-5D-Y-5L a few weeks later. Test-retest reliability was computed using weighted kappa and intraclass correlation coefficients, and convergent validity using Spearman's and Pearson's correlation coefficients. Results: Caregivers of 234 children completed the survey, with <1% missing values. Only 1.7% reported “no problems” on all dimensions (11111). The dimensions with the lowest percentage of “no problems” were SC and UA (both 8%). Test-retest reliability coefficients were fair to substantial for 4 dimensions (weighted kappa .30 to .79) but low for PD and overall health, as measured by the visual analog scale (EQ-VAS). Convergent validity was strong (Spearman's correlation .65 to .87) for mobility, SC, and PD; moderate to strong for worry/sadness/unhappiness (.47 to .60) and the EQ-VAS (Pearson's correlation .49); and weak to moderate for UA (.21 to .52). Conclusions: Convergent validity was generally good; test-retest reliability varied. Children with ID had lower scores on SC and UA than other populations, and their EQ-VAS could fluctuate greatly, indicating poorer and less stable health-related quality of life.
KW - child
KW - disability
KW - EQ-5D-5L
KW - health
KW - health-related quality of life
KW - psychometric
KW - well-being
UR - http://www.scopus.com/inward/record.url?scp=85189014273&partnerID=8YFLogxK
U2 - 10.1016/j.jval.2024.02.016
DO - 10.1016/j.jval.2024.02.016
M3 - Article
C2 - 38467188
AN - SCOPUS:85189014273
SN - 1098-3015
VL - 27
SP - 776
EP - 783
JO - Value in Health
JF - Value in Health
IS - 6
ER -