Health-related quality of life and family functioning in parents of children with Barth syndrome: an application of the Double ABCX model

Abstract Background Living with children with disabilities has a significant impact on parental health-related quality of life (HRQoL) and family functioning. Barth syndrome (BTHS) is a rare, X-linked disorder that primarily affects males, presenting symptoms such as cardiomyopathy, neutropenia, mus...

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Bibliographic Details
Main Authors: Yoonjeong Lim, Ickpyo Hong, Areum Han
Format: Article
Language:English
Published: BMC 2025-03-01
Series:Orphanet Journal of Rare Diseases
Subjects:
Online Access:https://doi.org/10.1186/s13023-025-03636-0
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