Employment impact and financial burden for families of children with fragile X syndrome: findings from the National Fragile X Survey
Version of Record online: 26 AUG 2010
© 2010 The Authors. Journal of Intellectual Disability Research © 2010 Blackwell Publishing Ltd
Journal of Intellectual Disability Research
Volume 54, Issue 10, pages 918–928, October 2010
How to Cite
Ouyang, L., Grosse, S., Raspa, M. and Bailey, D. (2010), Employment impact and financial burden for families of children with fragile X syndrome: findings from the National Fragile X Survey. Journal of Intellectual Disability Research, 54: 918–928. doi: 10.1111/j.1365-2788.2010.01320.x
- Issue online: 15 SEP 2010
- Version of Record online: 26 AUG 2010
- Accepted 27 July 2010
- co-occurring conditions;
- financial burden;
- fragile X syndrome;
- full mutation;
- health insurance
Background The employment impact and financial burden experienced by families of children with fragile X syndrome (FXS) has not been quantified in the USA.
Method Using a national fragile X family survey, we analysed data on 1019 families with at least one child who had a full FXS mutation. Out-of-pocket expenditures related to fragile X were reported. We used logistic regression to examine the role of insurance, number of affected children, and number of total co-occurring conditions in predicting the financial burden and employment impact of FXS, while adjusting for race, education, marital status and other sociodemographic predictors.
Results Almost half of families affected by FXS reported that they had experienced an increased financial burden and nearly 60% stated that they had had to change work hours or stop work because of FXS. Families with health insurance that met family needs were significantly less likely to report an excess financial burden. The type of insurance (private or public) was not associated with the reported financial burden. Affected children's mutation status, especially male children with the full mutation, was associated with employment impact. The total number of co-occurring conditions was associated with both financial burden and employment impact.
Conclusions Families affected by FXS experienced a significant employment impact and financial burden. Policies designed to help families with FXS need to take into consideration the dimension of co-occurring conditions.