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

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.

Quality of Life and Participation of Children With Visual Impairment: Comparison With Population Reference Scores.

Purpose: The purpose of this study was to investigate quality of life and participation in children aged 3 to 17 years with visual impairment (VI) compared to reference groups and between subgroups with increasing severity levels of VI. Methods: Parents of children aged 3 to 17 years (n = 500) and children aged 13 to 17 years (n = 75) completed the Child and Adolescent Scale of Participation (CASP). Children aged 7 to 17 years (n = 263) and their parents (n = 255) completed the KIDSCREEN-27 questionnaire to assess quality of life. Scores were compared to age and/or gender-appropriate population-based samples. For the CASP, a comparison was also made with children with chronic conditions or disabilities. The association between severity of VI and quality of life or participation was analyzed with linear regression models. Results: Children reported significantly worse on Physical Wellbeing and Social Support & Peers, but better on the School Environment KIDSCREEN-27 subscales compared to reference groups. Parents additionally reported worse on Autonomy & Parent Relation. Children's participation was significantly worse compared to a population-based sample, but significantly better compared to children with chronic conditions and disabilities. Having moderate or severe VI/blindness was significantly associated with worse participation, as reported by parents relative to those with no VI. Conclusions: Quality of life of children with VI is affected especially regarding Physical Wellbeing and Social Support & Peers compared to a reference population, and their participation is considerably worse. Participation was more affected in children with more severe VI. These results contribute to the understanding of the impact of VI. Interventions targeting physical health, social skills, and participation are warranted.