The Cost of Raising Individuals with Fragile X or Chromosome 15 Imprinting Disorders in Australia

Emma K Baker; Sheena Arora; David J Amor; Perrin Date; Meagan Cross; James O'Brien; Chloe Simons; Carolyn Rogers; Stephen Goodall; Jennie Slee; Chris Cahir; David E Godler

Journal article

The Cost of Raising Individuals with Fragile X or Chromosome 15 Imprinting Disorders in Australia

Emma K Baker, Sheena Arora, David J Amor, Perrin Date, Meagan Cross, James O'Brien, Chloe Simons, Carolyn Rogers, Stephen Goodall, Jennie Slee, Chris Cahir, David E Godler

JOURNAL OF AUTISM AND DEVELOPMENTAL DISORDERS | SPRINGER/PLENUM PUBLISHERS | Published : 2023

DOI: 10.1007/s10803-021-05193-4

Abstract

The study characterised differences in costs associated with raising a child between four rare disorders and examined the associations between these costs with clinical severity. Caregivers of 108 individuals with Prader-Willi, Angelman (AS), Chromosome 15q Duplication and fragile X (FXS) syndromes completed a modified Client Services Receipt Inventory and participants completed intellectual/developmental functioning and autism assessments. AS incurred the highest yearly costs per individual ($AUD96,994), while FXS had the lowest costs ($AUD33,221). Intellectual functioning negatively predicted total costs, after controlling for diagnosis. The effect of intellectual functioning on to..

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University of Melbourne Researchers

Emma Baker Author

David Amor Author

David Godler Author

Related Projects (1)

CHARACTERIZATION OF A NOVEL EPIGENETIC BOUNDARY AND LONG RANGE EPIGENETIC MODIFICATIONS SPECIFIC TO FMR1 EXPANSION CARRIERS WITH BEHAVIOURAL AND COGNITIVE DISORDERS - IMPLICATIONS FOR EARLIER DIAGNOSIS AND TREATMENT

Fragile X Syndrome (FXS) is the most common form of inherited intellectual disability and autism and is caused by a faulty switch in the gen..

Grants

Awarded by NHMRC

Awarded by Next Generation Clinical Researchers Program Career Development Fellowship - Medical Research Future Fund

Awarded by Financial Markets Foundation for Children (Australia)

Awarded by National Health and Medical Research Council of Australia

Funding Acknowledgements

This study was supported by the Victorian Government's Operational Infrastructure Support Program, with salaries supported by NHMRC project Grants (No. 1049299 and No. 1103389 to DEG.); Murdoch Children's Research Institute, Royal Children's Hospital Foundation (DEG); Next Generation Clinical Researchers ProgramCareer Development Fellowship, funded by the Medical Research Future Fund (MRF1141334 to DEG); the Financial Markets Foundation for Children (Australia; no. 2017 -361 to DEG and DJA); the Foundation for Angelman Syndrome Therapeutics (FAST; Australia to EKB); joint funding from the Prader-Willi Syndrome Association of Australia Inc (PWSAA), Prader-Willi Syndrome Association NSW Inc, Prader-Willi Syndrome Association of Victoria Inc, Interaction Disability Services Ltd, FAST Australia, and Dup15q Australia Ltd cocontributed with the Dup15q Alliance (USA) 50/50; and the Foundation for Prader-Willi Research (USA). We would also like to acknowledge Marta Arpone, Annabelle May-Marsh, Nusrat Ahmed and Cherie Green for their assistance with neuropsychological assessments.