Table 3 Characteristics of selected quality of life measures
Outcome Measure | Age | Domains (no of items) | Content Validity | Concurrent Validity | Construct (convergent/divergent) Validity | Internal Reliability | Retest (ICC) Reliability |
|---|---|---|---|---|---|---|---|
Care & comfort hypertonicity questionnaire (C&CHQ) | - | 1) Personal care (8) 2) Positioning/Transfer (7) 3) Comfort (5) 4)Interaction/Communication (7) | Retrospective analysis of patient notes and interviews of experts. | - | Higher scores were referred to ITB therapy, lower scores to Botulinum toxin. | - | - |
Caregiver priorities and child health index of life with disabilities (CPCHILD) | 5-12y | 1) Personal care (8) 2) Positioning, transferring & mobility(8) 3) Comfort emotions and behaviour (9) 4) Communication and social interaction (7) 5) Health (3) 6) Overall quality of life (1) | Caregiver rated importance of items × = 3.95 on 6 point ordinal scale (SD 0.63, range 2.67-4.90) | Domains moderately correlated to those of CHQ and PEDI | Higher GMFCS scores correlated with higher CPCHILD scores (worse outcome). Convergent (Spearman's ρ): (w. PEDI) Self Care 0.607 Mobility 0.619 Social Function 0.518 | α = 0.74-0.93 across all domains | 0.97 total questionnaire. 0.88-0.96 across the 6 domains. (95% CI 0.88-0.99). 0.85 (95% CI: 0.68-0.93) |
CP QOL-Child | 4-12y | 1) Social well-being and acceptance 2)Participation and physical health 3)Functioning 4)Emotional well-being 5)Pain and impact of disability 6)Access to services 7)Family Self-report: 53 items. Parent Proxy: 66 items | Domains determined in consultation with children with CP and their parents (28 families) | Domains moderately correlated to those of KIDSCREEN and CHQ | Global QOL r = 0.18-0.62 Global Health r = 0.21-0.56 | α = 0.74-0.92 (caregivers) (n = 205) α = 0.80-0.90 (child-self report) (n = 53) | 0.76-0.89 |
DISABKIDS* | 4-16y | 1) Impact of disease (10) 2) Communication (2) | Domains determined in consultation with children and their parents (9 families). | - | Discriminate: was more able to differentiate between levels of disability than CHQ and KINDL | α = 0.71-0.91 Inter-rater (concordance) 0.14-0.84 (across scales) | - |
PedsQL 3.0 CP Module | 2-18y | 1) Daily activities(9) 2) School activities (4) 3) Movement and balance (5) 4) Pain and hurt (4) 5) Fatigue (4) 6) Eating activities (5) 7) Speech and communication (4) | - | - | Discriminate: Able to distinguish between typically developing children and children with CP. | Child Self-report: 0.77-0.93 | - |