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

Abstract

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.

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

“…The KIDSCREEN-27 can also be used in all types of epidemiological, paediatric and clinical studies, in health services research and health reporting, and in integrated outcome measurement (KIDSCREEN 2006). However, a recent study suggests that it might not be sensitive enough to the specific problems children with VI encounter (Elsman et al 2021a). Therefore, it might not be recommended to use this instrument to inform healthcare decisions in children with VI.…”

“…The CASP has subsequently been used as a separate instrument and in children with other diagnoses and as such can be used for individualized intervention planning, programme evaluation and population-based research (Bedell 2011). It seems suitable for children with VI (Elsman et al 2021a), although no self-report version for younger children exists alongside the proxy-report version, a feature of the PAI-CY that is highly valued (Elsman et al 2017).…”

“…However, a recent study suggests that it might not be sensitive enough to the specific problems children with VI encounter (Elsman et al. 2021a ). Therefore, it might not be recommended to use this instrument to inform healthcare decisions in children with VI.…”

“…It seems suitable for children with VI (Elsman et al. 2021a ), although no self‐report version for younger children exists alongside the proxy‐report version, a feature of the PAI‐CY that is highly valued (Elsman et al. 2017 ).…”

A Study Into the Relationship Between Adaptive Skills and Visual Impairment in Individuals With and Without Intellectual Disabilities

“…To support correct classifications, the relationship between visual impairments and adaptive functioning needs to be verified. Previous studies on visual impairments and adaptive functioning did not distinguish between low vision and blindness (Desrosiers et al, 2009;Elsman et al, 2021;Goertz et al, 2010;Hatton et al, 1997;Heppe et al, 2020;Tadić et al, 2010). This shortcoming may result in an expectation that there is a difference in adaptive functioning between individuals with low vision and those with blindness.…”