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2022
Devising a Missing Data Rule for a Quality of Life Questionnaire: A Simulation Study
Jacoby, P., Whitehouse, A., Leonard, H., Saldaris, J., Demarest, S., Benke, T. & Downs, J., 1 Aug 2022, In: Journal of Developmental and Behavioral Pediatrics. 43, 6, p. E414-E418 5 p.Research output: Contribution to journal › Article › peer-review
Open Access2 Link opens in a new tab Citations (Scopus) -
Modelling quality of life in children with intellectual disability using regression trees
Jacoby, P., Williams, K., Reddihough, D., Leonard, H., Whitehouse, A. & Downs, J., Sept 2022, In: Developmental Medicine and Child Neurology. 64, 9, p. 1145-1155 11 p.Research output: Contribution to journal › Article › peer-review
Open Access13 Link opens in a new tab Citations (Scopus) -
Modifiable child and caregiver factors that influence community participation among children with Down syndrome
Shields, N., Epstein, A., Jacoby, P., Kim, R., Leonard, H., Reddihough, D., Whitehouse, A., Murphy, N. & Downs, J., 2022, In: Disability and Rehabilitation. 44, 4, p. 600-607 8 p.Research output: Contribution to journal › Article › peer-review
16 Link opens in a new tab Citations (Web of Science) -
Quality of life beyond diagnosis in intellectual disability – Latent profiling
Leonard, H., Whitehouse, A., Jacoby, P., Benke, T., Demarest, S., Saldaris, J., Wong, K., Reddihough, D., Williams, K. & Downs, J., Oct 2022, In: Research in Developmental Disabilities. 129, 104322.Research output: Contribution to journal › Article › peer-review
Open Access22 Link opens in a new tab Citations (Scopus) -
2021
Determinants of quality of life in Rett syndrome: New findings on associations with genotype
Mendoza, J., Downs, J., Wong, K. & Leonard, H., 1 Sept 2021, In: Journal of Medical Genetics. 58, 9, p. 637-644 8 p., e107120.Research output: Contribution to journal › Article › peer-review
Open Access12 Link opens in a new tab Citations (Web of Science) -
Determinants of Sleep Problems in Children with Intellectual Disability
Gilbertson, M., Richardson, C., Eastwood, P., Wilson, A., Jacoby, P., Leonard, H. & Downs, J., Oct 2021, In: Journal of Sleep Research. 30, 5, e13361.Research output: Contribution to journal › Article › peer-review
Open Access24 Link opens in a new tab Citations (Scopus) -
Exploring quality of life in individuals with a severe developmental and epileptic encephalopathy, CDKL5 Deficiency Disorder
Leonard, H., Junaid, M., Wong, K., Demarest, S. & Downs, J., Jan 2021, In: Epilepsy Research. 169, 106521.Research output: Contribution to journal › Article › peer-review
42 Link opens in a new tab Citations (Web of Science) -
The effect of functioning on Quality of Life Inventory-Disability measured quality of life is not mediated or moderated by parental psychological distress
Whitehouse, A. J. O., Jacoby, P., Reddihough, D., Leonard, H., Williams, K. & Downs, J., Oct 2021, In: Quality of Life Research. 30, 10, p. 2875-2885 11 p.Research output: Contribution to journal › Article › peer-review
Open Access7 Link opens in a new tab Citations (Scopus) -
2020
Implementing telehealth support to increase physical activity in girls and women with Rett syndrome - ActivRett: Protocol for a waitlist randomised controlled trial
Downs, J., Lotan, M., Elefant, C., Leonard, H., Wong, K., Buckley, N. & Stahlhut, M., 29 Dec 2020, In: BMJ Open. 10, 12, e042446.Research output: Contribution to journal › Review article › peer-review
Open Access4 Link opens in a new tab Citations (Web of Science) -
Using directed-content analysis to identify a framework for understanding quality of life in adults with Rett syndrome
Strugnell, A., Leonard, H., Epstein, A. & Downs, J., Dec 2020, In: Disability and Rehabilitation. 42, 26, p. 3800-3807 8 p.Research output: Contribution to journal › Article › peer-review
Open Access10 Link opens in a new tab Citations (Scopus) -
2019
A framework for understanding quality of life domains in individuals with the CDKL5 deficiency disorder
Tangarorang, J., Leonard, H., Epstein, A. & Downs, J., Feb 2019, In: American Journal of Medical Genetics Part A. 179, 2, p. 249-256 8 p.Research output: Contribution to journal › Article › peer-review
19 Link opens in a new tab Citations (Web of Science) -
Content validation of the Quality of Life Inventory—Disability
Epstein, A., Williams, K., Reddihough, D., Murphy, N., Leonard, H., Whitehouse, A., Jacoby, P. & Downs, J., 1 Jan 2019, In: Child: Care, Health and Development. 45, 5, p. 654-659 6 p.Research output: Contribution to journal › Article › peer-review
32 Link opens in a new tab Citations (Scopus) -
Psychometric properties of the Quality of Life Inventory-Disability (QI-Disability) measure
Downs, J., Jacoby, P., Leonard, H., Epstein, A., Murphy, N., Davis, E., Reddihough, D., Whitehouse, A. & Williams, K., 15 Mar 2019, In: Quality of Life Research. 28, 3, p. 783-794 12 p.Research output: Contribution to journal › Article › peer-review
Open Access84 Link opens in a new tab Citations (Scopus) -
Severity Assessment in CDKL5 Deficiency Disorder
Demarest, S., Pestana-Knight, E. M., Olson, H. E., Downs, J., Marsh, E. D., Kaufmann, W. E., Partridge, C. A., Leonard, H., Gwadry-Sridhar, F., Frame, K. E., Cross, J. H., Chin, R. F. M., Parikh, S., Panzer, A., Weisenberg, J., Utley, K., Jaksha, A., Amin, S., Khwaja, O. & Devinsky, O. & 3 others, , 1 Aug 2019, In: Pediatric Neurology. 97, p. 38-42 5 p.Research output: Contribution to journal › Article › peer-review
Open Access59 Link opens in a new tab Citations (Scopus) -
2017
Qualitative analysis of parental observations on quality of life in Australian children with Down syndrome
Murphy, N., Epstein, A., Leonard, H., Davis, E., Reddihough, D., Whitehouse, A., Jacoby, P., Bourke, J., Williams, K. & Downs, J., Feb 2017, In: Journal of Developmental and Behavioral Pediatrics. 38, 2, p. 161-168 8 p.Research output: Contribution to journal › Article › peer-review
Open Access44 Link opens in a new tab Citations (Scopus)