QI-Disability

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.

Quality of Life Study Newsletter October 2020.

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), children and 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, children with the CDKL5 Deficiency Disorder (CDD, a rare X-linked genetic neurodevelopmental disorder) as young as 3 years, and adults with CDD.

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.

The following language translations are available: Czech, Danish, Dutch, French, German, Hebrew, and Hungarian.

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

QI-Disability was used as an outcome measure for evaluation of Experience Collider, a circus, dance and theatre program for children with high support needs working together with members of an able-bodied circus troupe. See the full report here.

Whitehouse A, Jacoby P, Reddihough D, Leonard H, Williams K, Downs J. The effect of functioning on Quality of Life Inventory-Disability measured quality of life in children with intellectual disability is not mediated or moderated by parental psychological distress. Quality of Life Research. 2021 May 3. doi: 10.1007/s11136-021-02855-9. Online ahead of print.

Reddihough D, Leonard H, Jacoby P, Kim R, Epstein A, Murphy N, Reid S, Whitehouse A, Williams K, Downs J. Comorbidities and quality of life in children with intellectual disability. Child: Care, Health and Development. Accepted 12 April 2021. doi.org/10.1111/cch.12873

Leonard H, Junaid M, Wong K, Demarest S, Downs J. Exploring quality of life in individuals with a severe developmental and epileptic encephalopathy, CDKL5 Deficiency Disorder. Epilepsy Research. 2021;169:106521. Acc 31 Nov 2020. doi: 10.1016/j.eplepsyres.2020.106521. Epub 2020 Dec 1.

Williams K, Jacoby P, Whitehouse A, Kim R, Epstein A, Murphy N, Reid S, Leonard H, Reddihough D, Downs J. Functioning, participation and quality of life in children with intellectual disability: An observational study. Developmental Medicine and Child Neurology. 30/8/2020. Doi: 10.1111/(ISSN)1469-8749

Mendoza J, Downs J, Wong K, Leonard H. Determinants of quality of life in Rett syndrome: new findings on associations with genotype. Journal of Medical Genetics. 2020 Aug 25. doi: 10.1136/jmedgenet-2020-107120.

Jacoby P, Epstein A, Kim R, Murphy N, Leonard H, Williams K, Reddihough D, Whitehouse A, Downs J. Reliability of the Quality of Life Inventory-Disability (QI-Disability) measure in children with intellectual disability, Journal of Developmental and Behavioral Pediatrics, 2020. May 12; 41:534–539. doi:10.1097/DBP.0000000000000815.

Glasson EJ, Forbes D, Ravikumara R, Nagarajan L, Wilson A, Jacoby P, Wong K, Leonard H, Downs J. Gastrostomy and quality of life in children with intellectual disability: a qualitative study, Archives of Disease in Childhood. 2020 Oct;105(10):969-974. doi: 10.1136/archdischild-2020-318796. Epub 2020 Apr 8.

Epstein A, Williams K, Reddihough D, Murphy N, Leonard H, Whitehouse A, Jacoby P, Downs J. Content validation of the Quality of Life Inventory - Disability (QI-Disability). Child: care, health and development. 2019 Jun 21;45(5):654-659. doi: 10.1111/cch.12691.

Jacoby P, Epstein A, Kim R, Murphy N, Leonard H, Williams K, Reddihough D, Whitehouse A, Downs J. Reliability of the Quality of Life Inventory-Disability (QI-Disability) measure in children with intellectual disability, Journal of Developmental and Behavioral Pediatrics, 2020. May 12. doi:10.1097/DBP.0000000000000815.

Glasson EJ, Forbes D, Ravikumara R, Nagarajan L, Wilson A, Jacoby P, Wong K, Leonard H, Downs J. Gastrostomy and quality of life in children with intellectual disability: a qualitative study, Archives of Disease in Childhood. 2020 Epub ahead of print April 9 2020. doi:.org/10.1136/archdischild-2020-318796.

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.

Epstein, A., Williams, K., Reddihough, D., Murphy, N., Leonard, H., Whitehouse, A., Jacoby, P., & Downs, J. 2019. Content validation of the Quality of Life Inventory–Disability. Child: Care, Health and Development, 45(5), 654-9.

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.

Jacoby P, Whitehouse A, Leonard H, Saldaris J, Demarest S, Benke T, Downs J. Devising a missing data rule for a quality of life questionnaire – a simulation study. Journal of Developmental and Behavioral Pediatrics. Accepted 24 Jan 2022, DOI: 10.1097/dbp.0000000000001061.

Leonard H, Junaid M, Wong K, Aimetti A, Pestana-Knight E, Downs J. Influences on the trajectory and subsequent outcomes in CDKL5 Deficiency Disorder. Epilepsia. 2022 Feb;63(2):352-363. doi: 10.1111/epi.17125. Acc 3 Nov 2021.