Journal article
Quality of life beyond diagnosis in intellectual disability – Latent profiling
H Leonard, A Whitehouse, P Jacoby, T Benke, S Demarest, J Saldaris, K Wong, D Reddihough, K Williams, J Downs
Research in Developmental Disabilities | PERGAMON-ELSEVIER SCIENCE LTD | Published : 2022
Abstract
Objective: To compare quality of life (QOL) across diagnoses associated with intellectual disability, construct QOL profiles and evaluate membership by diagnostic group, function and comorbidities. Method: Primary caregivers of 526 children with intellectual disability (age 5–18 years) and a diagnosis of cerebral palsy, autism spectrum disorder, Down syndrome, CDKL5 deficiency disorder or Rett syndrome completed the Quality of Life Inventory-Disability (QI-Disability) questionnaire. Latent profile analysis of the QI-Disability domain scores was conducted. Results: The mean (SD) total QOL score was 67.8 (13.4), ranging from 60.3 (14.6) for CDD to 77.5 (11.7) for Down syndrome. Three classes d..
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Awarded by National Institute of Neurological Disorders and Stroke
Funding Acknowledgements
We extend our thanks to the families for their participation in this study. This study was funded by the National Health and Medical Research Council (#1103745) , the International Foundation for CDKL5 Research, and the National Institute for Health (U01NS114312-01A1) . We acknowledge the support of the WA Autism Registry. The Victorian Cerebral Palsy Register receives funding from the Victorian Department of Health and Human Services and from the Victorian Government's Operational Infra- structure Support Program for support for register staff. The authors acknowledge the support of Disability Services Commission WA in establishing the Down syndrome database, and community organizations Developmental Disability WA and the Down Syndrome Association of Western Australia for their support. We thank the Australian Paediatric Surveillance Unit (APSU) and the Rett Syndrome Association of Australia for their ongoing support in case ascertainment for the Australian Rett Syndrome Database. We acknowledge for ongoing support from the International Foundation for CDKL5 Research since the International CDKL5 Disorder Database was established in 2012.