Interrater reliability and agreement between children with visual impairment and their parents on participation and quality of life

Abstract

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.

Factors Associated with Discrepancy of Child-Adolescent/Parent Reported Quality of Life in the Era of COVID-19

“…A study in small children showed that weaker parent–child relationships and better social support of children were associated with more discrepancies [ 28 ]. Comorbidities have also been found to be factors associated with discrepancies in visually impaired children [ 29 ]. Moreover, the level and type of education of the children and the level of education of the parents were also found to be significantly associated with discrepancies, as was the number of hospital admissions for children with chronic diseases [ 30 ].…”