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The Quality of Life Inventory-Disability, QI-Disability, is a measure of quality of life for children and adolescents with intellectual disability.

This parent-report questionnaire is designed to capture the health and wellbeing of school-aged children (5 to 18 years) across different levels of disability.

QI-Disability was designed in direct collaboration with the families and carers of individuals representing the wide spectrum of intellectual disability. Items were derived from interviews with parent caregivers.

QI-Disability measures quality of life. There are 32 questions classified across 6 domains:

Caregivers are instructed to respond to questions on behalf of their child with an intellectual disability about observable aspects of the child’s physical, emotional and social wellbeing. 

For example: “Over the past month, how often has your child had enough energy to participate in daily routines and activities?”

QI-Disability was initially developed for children and adolescents with Down syndrome, Rett syndrome (a severe genetic neurodevelopmental disorder mainly affecting females), and those young people with cerebral palsy or autism spectrum disorder who have additional difficulties with cognition.

We are currently working towards expanding the use of QI-Disability to include a broader range of conditions. For example, QI-Disability is suitable for adults with Rett syndrome and the CDKL5 Deficiency Disorder (a rare X-linked genetic neurodevelopmental disorder).

QI-Disability helps multi-disciplinary teams identify areas where support is needed. This instrument is also helping to evaluate different treatments, interventions and services that promote successful outcomes for children with complex needs.

Researchers can use QI-Disability as a tool for screening, monitoring, and assessing their participants in research.

For more information, download our QI-Disability Fact Sheet.

Strugnell, A., Leonard, H., Epstein, A., & Downs, J. 2019. Using directed-content analysis to identify a framework for understanding quality of life in adults with Rett syndrome. Disability and Rehabilitation, in press.

Downs, J., Jacoby, P., Leonard, H., Epstein, A., Murphy, N., Davis, E., Reddihough, D., Whitehouse, A., & Williams, K. 2018. Psychometric properties of the Quality of Life Inventory-Disability (QI-Disability) measure. Quality of Life Research, 28, 783-94.

Tangarorang, J., Leonard, H., Epstein, A., & Downs, J. 2019. A framework for understanding quality of life domains in individuals with the CDKL5 Deficiency Disorder. American Journal of Medical Genetics Part A, 179(2), 2S49-56.

Epstein, A., Whitehouse, A., Williams, K., Murphy, N., Leonard, H., Davis, E., Reddihough, D., & Downs, J. 2019. Parent-observed thematic data on quality of life in children with autism spectrum disorder. Autism: International Journal of Research and Practice, 23(1), 71-80.

Davis, E., Reddihough, D., Murphy, N., Epstein, A., Reid, S.M., Whitehouse, A., Williams, K., Leonard, H., & Downs, J. 2017. Exploring quality of life of children with cerebral palsy and intellectual disability: What are the important domains of life? Child: Care, Health and Development, 43(6), 854-60.

Murphy, N., Epstein, A., Leonard, H., Davis, E., Reddihough, D. Whitehouse, A., Jacoby, P., Bourke, J., Williams, K. & Downs, J. 2017. Qualitative analysis of parental observations on quality of life in Australian children with Down syndrome. Journal of Developmental and Behavioral Pediatrics, 38(2), 161-8.

Epstein, A., Leonard, H., Davis, E., Williams, K., Reddihough, D., Murphy, N., Whitehouse, A., & Downs, J. 2016. Conceptualizing a quality of life framework for girls with Rett syndrome using qualitative methods. American Journal of Medical Genetics Part A, 170(3), 645-53.

QI-Disability was developed by a multidisciplinary research team from across Australia.

Our team:

Dr Jenny Downs

Dr Helen Leonard

Dr Peter Jacoby

Dr Andrew Whitehouse

Dr Katrina Williams

Dr Dinah Reddihough

Amy Epstein, MA Psych

Nada Murphy, MAppPsych


Additional support provided by:

Dr Elise Davis

Dr Sue Reid

Jenny Bourke, MPH

Dr Emma Glasson

Dr Keely Bebbington

 

The development of QI-Disability was funded by the National Health and Medical Research Council (#1103745).

Individuals or parties interested in using QI-Disability, please contact:

Associate Professor Jenny Downs 

Principal Research Fellow, Telethon Kids Institute

PO Box 855, West Perth, Western Australia, 6872 Australia

Phone: +61 8 6319 1763

Email: Jenny.Downs@telethonkids.org.au