Psychometric properties of the Quality of Life Inventory-Disability (QI-Disability) measure

Abstract

Purpose: Children with intellectual disability encounter daily challenges beyond those captured in current quality of life measures. This study evaluated a new parent-report measure for children with intellectual disability, the Quality of Life Inventory-Disability (QI-Disability). Methods: QI-Disability was administered to 253 primary caregivers of children (aged 5-18 years) with intellectual disability across four diagnostic groups: Rett syndrome, Down syndrome, cerebral palsy or autism spectrum disorder. Exploratory and confirmatory factor analyses were conducted and goodness of fit of the factor structure assessed. Associations between QI-Disability scores, and diagnostic and age groups were examined with linear regression. Results: Six domains were identified: physical health, positive emotions, negative emotions, social interaction, leisure and the outdoors, and independence. Goodness of fit statistics were satisfactory and similar for the whole sample and when the sample was split by ability to walk or talk. On 100 point scales and compared to Rett syndrome, children with Down syndrome had higher leisure and the outdoors (coefficient 10.6, 95%CI 3.4,17.8) and independence (coefficient 29.7, 95%CI 22.9, 36.5) scores whereas children with autism spectrum disorder had lower social interaction scores (coefficient-12.8, 95%CI-19.3,-6.4). Scores for positive emotions (coefficient-6.1, 95%CI-10.7,-1.6) and leisure and the outdoors (coefficient 5.4, 95%CI-10.6,-0.1) were lower for adolescents compared with children. Conclusions: Initial evaluation suggests that QI-Disability is a reliable and valid measure of quality of life across the spectrum of intellectual disability. It has potential to allow clearer identification of support needs and measure responsiveness to interventions.

Assessment of Anxiety and Depression in Polish Primary Parental Caregivers of Children with Cerebral Palsy Compared to a Control Group, as well as Identification of Selected Predictors

“…A lower score on the GMFCS corresponds to a slightly higher level of depression. As reported by other authors, in most studies this variable was not positively correlated to anxiety and depression in parents of children with CP [21,25,26,41,43,44,45].…”

Adapting a Measure of Quality of Life to Children with Down Syndrome for the Development of Evidence-based Interventions

“…Among existing individual QoL frameworks, Schalock and Verdugo's (2002) eight-domain model (composed of eight intercorrelated domains of emotional wellbeing, physical wellbeing, material wellbeing, personal development, rights, self-determination, social inclusion, and interpersonal relationships) is one of the most internationally accepted and used in the ID field (Bowling & Gabriel, 2004;Gómez, Verdugo, & Arias, 2010;Schalock, Verdugo, Gómez, & Reinders, 2016;Van Hecke et al, 2018;Xu, Wang, Xiang, & Hu, 2005). However, research has also highlighted the need for measurement tools of QoL with adequate evidence of validity and reliability for children with DS (Downs et al, 2019;Goodman & Brixner, 2013). To our knowledge, only two individual QoL instruments have shown adequate evidence of content and validity based on their internal structure for use with children and youth with ID.…”

“…To our knowledge, only two individual QoL instruments have shown adequate evidence of content and validity based on their internal structure for use with children and youth with ID. One is the Quality of Life Inventory-Disability (QI-Disability; Downs et al, 2019), a recently published Australian instrument for 6-to-18-year-old children with ID. It comprises 32 items accompanied by a five-point frequency scale that measures six domains (social interaction, positive emotions, physical health, negative emotions, leisure and the outdoors, and independence).…”

Using directed-content analysis to identify a framework for understanding quality of life in adults with Rett syndrome

“…In this qualitative study, aspects of QOL important to adults with RTT were coded into a framework previously identified for children [11]. Based on extensive qualitative data for children with intellectual disability to 18 years of age [11,13,14,15], we recently developed the Quality of Life inventory -Disability (QI-Disability) measure of QOL and found preliminary evidence of reliability and validity [21]. Domains and their elements appear similar for adults with RTT whose disability is severe and this concordance suggests that QI-Disability will also be appropriate for this group.…”

“…The data provided in this study will inform the choice of a suitable QOL measure for this group. Data also suggest that the newly validated QI-Disability [21] recently developed for children with RTT would be appropriate for use in the adult population. Use of this measure could guide clinicians in identifying the need for supports and services and aid in the provision of life-long and individualized management strategies to promote a good QOL for women with RTT.…”