PURPOSE: To investigate interrater reliability and agreement between children with visual impairment (VI) and their parents on participation and quality of life and factors associated with disagreement.
METHODS: Children 7-17 years and their parents completed the PAI-CY 7-12 (n = 180) and 13-17 (n = 65), the KIDSCREEN-27 (n = 250) and the CASP (n = 70). Mean scores of children and parents were compared, with effect sizes for the differences. Interrater reliability was evaluated using intraclass correlation coefficients (ICCs), whereas agreement was assessed using the Bland-Altman limits of agreement. Linear regression analyses examined child- and proxy-related factors associated with discrepancies.
RESULTS: On average, children rated their participation and quality of life as significantly better than their parents on most (sub)scales, but with wide range of disagreement. Effect sizes were large for the PAI-CY 7-12 (0.86) and 13-17 (0.86) and small for the CASP (0.36) and KIDSCREEN-27 (0.18-0.28). Interrater reliability was poor for the PAI-CY 7-12 (ICC = 0.29) and most KIDSCREEN-27 subscales (ICC =0.18-0.32), moderate for the PAI-CY 13-17 (ICC =0.43) and the KIDSCREEN-27 Physical Wellbeing subscale (ICC = 0.46) and good for the CASP (ICC = 0.63). Comorbidity was significantly associated with greater discrepancies on participation scales.
CONCLUSION: Children with VI and their parents have different perspectives on the child's participation and quality of life. Disagreement was largest on participation scales and smallest on quality of life subscales, while opposite results were found for interrater reliability. Reports of children and parents seem to be complementary and are both relevant to obtain a complete picture of the burden of VI and relevant to inform healthcare decisions.