The Psychosocial Impact of Fabry Disease on Pediatric Patients

Overview

Journal J Pediatr Genet

Publisher Thieme

Specialty Pediatrics

Date 2016 Sep 13

PMID 27617155

Citations 10

Authors

Nicolle Bugescu

Paige E Naylor

Kyr Hudson

Christa D Aoki

Matthew J Cordova

Wendy Packman

Affiliations

Soon will be listed here.

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.

Citing Articles

A systematic literature review on the health-related quality of life and economic burden of Fabry disease.

Jovanovic A, Miller-Hodges E, Castriota F, Takyar S, Howitt H, Ayodele O Orphanet J Rare Dis. 2024; 19(1):181.

PMID: 38689282 PMC: 11062018. DOI: 10.1186/s13023-024-03131-y.

Fabry Disease and Central Nervous System Involvement: From Big to Small, from Brain to Synapse.

Cortes-Saladelafont E, Fernandez-Martin J, Ortolano S Int J Mol Sci. 2023; 24(6).

PMID: 36982318 PMC: 10049671. DOI: 10.3390/ijms24065246.

Neuropsychiatric Symptoms and Their Association With Sex, Age, and Enzyme Replacement Therapy in Fabry Disease: A Systematic Review.

Mroczek M, Maniscalco I, Sendel M, Baron R, Seifritz E, Nowak A Front Psychiatry. 2022; 13:829128.

PMID: 35370863 PMC: 8967288. DOI: 10.3389/fpsyt.2022.829128.

Remor E, Baldellou A Health Psychol Behav Med. 2021; 6(1):79-92.

PMID: 34040822 PMC: 8114346. DOI: 10.1080/21642850.2018.1462705.

Left to themselves: Time to target chronic pain in childhood rare diseases.

Sieberg C, Lebel A, Silliman E, Holmes S, Borsook D, Elman I Neurosci Biobehav Rev. 2021; 126:276-288.

PMID: 33774086 PMC: 8738995. DOI: 10.1016/j.neubiorev.2021.03.008.

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