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

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Bibliographic Details
Title: The Cost of Raising Individuals with Fragile X or Chromosome 15 Imprinting Disorders in Australia
Language: English
Authors: Baker, Emma K., Arora, Sheena, Amor, David J., Date, Perrin, Cross, Meagan, O'Brien, James, Simons, Chloe, Rogers, Carolyn, Goodall, Stephen, Slee, Jennie, Cahir, Chris, Godler, David E.
Source: Journal of Autism and Developmental Disorders. Apr 2023 53(4):1682-1692.
Availability: Springer. Available from: Springer Nature. One New York Plaza, Suite 4600, New York, NY 10004. Tel: 800-777-4643; Tel: 212-460-1500; Fax: 212-460-1700; e-mail: customerservice@springernature.com; Web site: https://link.springer.com/
Peer Reviewed: Y
Page Count: 11
Publication Date: 2023
Document Type: Journal Articles
Reports - Research
Descriptors: Costs, Child Rearing, Genetic Disorders, Severity (of Disability), Foreign Countries, Autism Spectrum Disorders, Predictor Variables
Geographic Terms: Australia
DOI: 10.1007/s10803-021-05193-4
ISSN: 0162-3257
1573-3432
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 total costs for those with AS was significantly different to the other syndromes. The study highlights the significant costs associated with these syndromes, particularly AS, linked with severity of intellectual functioning.
Abstractor: As Provided
Entry Date: 2023
Accession Number: EJ1372066
Database: ERIC
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Description
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 total costs for those with AS was significantly different to the other syndromes. The study highlights the significant costs associated with these syndromes, particularly AS, linked with severity of intellectual functioning.
ISSN:0162-3257
1573-3432
DOI:10.1007/s10803-021-05193-4