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Background: Barth syndrome is a rare X-linked genetic disorder that affects multiple organs and results in complex clinical manifestations. Methods: In a cohort of BTHS-affected patients and families, the current study examined caregiver- and self-reported psychological stability, as well as QoL. Participants completed the depression and anxiety questionnaires of the Patient-Reported Outcomes Information System Short Form 8A and Health-related quality of life surveys at enrollment and again during a follow-up period ranging from 6 to 36 months after baseline. There was a trend toward discordance between caregiver and self-reported outcomes among the available caregiver-patient dyad results in the database. Conclusion: Our report provides valuable insight into the effects of BTHS' psychosocial and mental health factors. Implications of these findings include longitudinal examination of QoL and screening for psychological disorders in BTHS care in order to identify interventions that can have a dramatic effect on health status and disease course.
Source link: https://doi.org/10.3390/jcdd9120448
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