How do children at special schools and their parents perceive their HRQoL compared to children at open schools?

Abstract

BackgroundThere has been some debate in the past as to who should determine values for different health states for economic evaluation. The aim of this study was to compare the Health Related Quality of Life (HRQoL) in children attending open schools (OS) and children with disabilities attending a special school (SS) and their parents in Cape Town South Africa.MethodsThe EQ-5D-Y and a proxy version were administered to the children and their parents were requested to fill in the EQ-5D-Y proxy version without consultation with their children on the same day.ResultsA response rate of over 20% resulted in 567 sets of child/adult responses from OS children and 61 responses from SS children. Children with special needs reported more problems in the "Mobility" and "Looking after myself" domains but their scores with regard to "Doing usual activities", "Pain or discomfort" and "Worried, sad or unhappy" were similar to their typically developing counterparts. The mean Visual Analogue Scale (VAS) score of SS children was (88.4, SD18.3, range 40-100) which was not different to the mean score of the OS respondents (87.9, SD16.5, range 5-100).The association between adult and child scores was fair to moderate in the domains. The correlations in VAS scores between Open Schools children and female care-givers' scores significant but low (r = .33, p < .001) and insignificant between Special School children and adult (r = .16, p = .24).DiscussionIt would appear that children with disabilities do not perceive their HRQoL to be worse than their able bodied counterparts, although they do recognise their limitations in the domains of "Mobility" and "Doing usual activities".ConclusionsThis finding lends weight to the argument that valuation of health states by children affected by these health states should not be included for the purpose of economic analysis as the child's resilience might result in better values for health states and possibly a correspondingly smaller resource allocation. Conversely, if HRQoL is to be used as a clinical outcome, then it is preferable to include the children's values as proxy report does not appear to be highly correlated with the child's own perceptions.

Health-Related Quality of Life in Children Attending Special and Typical Education Greek Schools

“…This is in agreement with previous studies comparing children with disabilities and typical children (Edwards et al, 2003;Gkoltsiou et al, 2008;Ikeda et al, 2014;Watson & Keith, 2002;Zwicker et al, 2013). In contrast, our results, do not confirm previous studies, which concluded that, despite any differences in the physical functioning domain, children with disabilities display similar or even better HRQOL scores compared with typical children (Albrecht & Devlieger, 1999;Jelsma & Ramma, 2010;Ju et al, 2006;King et al, 1993;Wendelborg & Tøssebro, 2011). Of the above, two studies have been performed in school settings.…”

“…First, some studies examined children with various physical disabilities (Ju et al, 2006;Watson & Keith, 2002), intellectual disabilities (Ikeda et al, 2014;Zwicker et al, 2013) or both (present study; Edwards et al, 2003) while one study examined students with chronic illnesses without providing specific information regarding the type or the severity of the illness (Gkoltsiou et al, 2008). Second, the use of the parent-proxy version of the questionnaire might have resulted in lower HRQOL scores than those reported by the children themselves (Achenbach, McConaughy, & Howell, 1987;Jelsma & Ramma, 2010). However, using self-report measures, some researchers have reported differences between those two groups (Edwards et al, 2003;Ikeda et al, 2014;Watson & Keith, 2002;Zwicker et al, 2013) but others have found the opposite (Jelsma & Ramma, 2010;Ju et al, 2006;King et al, 1993).…”

“…Second, the use of the parent-proxy version of the questionnaire might have resulted in lower HRQOL scores than those reported by the children themselves (Achenbach, McConaughy, & Howell, 1987;Jelsma & Ramma, 2010). However, using self-report measures, some researchers have reported differences between those two groups (Edwards et al, 2003;Ikeda et al, 2014;Watson & Keith, 2002;Zwicker et al, 2013) but others have found the opposite (Jelsma & Ramma, 2010;Ju et al, 2006;King et al, 1993). Further, Gkoltsiou et al examined a sample similar to the present one and they reported smaller group differences using the parent-proxy version compared to those identified when the self-rated version was used.…”

“…Ju et al (2006) found that adolescent students (aged 14.9 years) with various physical disabilities showed a lower self-rated quality of life score and material well-being but a higher score in productivity, safety and emotion domains than their typical school peers. using both self-and parent assessment forms, Jelsma and Ramma (2010) showed that students at special schools provided similar HRQOL scores in most domains to their typically developing peers. It was concluded that children with disabilities do not perceive their HRQOL to be worse than their able bodied counterparts, although they do recognise their limitations in some HRQOL domains.…”

“…However, understanding perceptions of quality of life in children with various types of disability, who spend a significant part of their daily life together at the same school, may provide additional useful information regarding their HRQOL from an educational perspective. Further, such information can be relevant when making decisions about resource allocation (Eiser & Morse, 2001b;Jelsma & Ramma, 2010). For example, Jelsma and Ramma recommended against the use of self-rated HRQOL scores for children with disabilities for the purpose of economic analysis as it may result in smaller allocation of resources.…”