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The Psychosocial Impact of Fabry Disease on Pediatric Patients

Authors :
Christa D. Aoki
Matthew J. Cordova
Nicolle Bugescu
Kyr Hudson
Paige E. Naylor
Wendy Packman
Source :
Journal of Pediatric Genetics. :141-149
Publication Year :
2016
Publisher :
Georg Thieme Verlag KG, 2016.

Abstract

Fabry disease (FD) is a multisystemic disease that has previously been reported to result in poorer quality of life and psychosocial functioning in impacted adults. However, prior to the current study, limited data were available on the impact of FD in children and adolescents. Therefore, the present study examined the differences of quality of life, psychosocial functioning, and depression in children with FD as compared with a healthy sample. Results indicated that children with FD were experiencing poorer quality of life than their healthy counterparts. Notably, results consistently identified adolescents with FD as more heavily impacted than younger children, although not to the same degree as adults with FD as reported in previous studies. Therefore, adolescence may be a critical point in the development of individuals with FD during which effective multidisciplinary interventions could be utilized to prevent poor quality of life and psychosocial functioning in adulthood.

Details

ISSN :
2146460X and 21464596
Database :
OpenAIRE
Journal :
Journal of Pediatric Genetics
Accession number :
edsair.doi.dedup.....c08a12f921bea75277569083a814f60b
Full Text :
https://doi.org/10.1055/s-0036-1584357