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Published on: March 14, 2018
Psychosocial Functioning in Youth with Barth Syndrome
Eric A Storch1, Mary Keeley, Lisa J Merlo
1Departments of Pediatrics and Psychiatry, University of South Florida, St. Petersburg, FL.
Summary
Children with Barth Syndrome experience lower quality of life and psychosocial challenges. Interventions are needed to support these pediatric patients and their families in managing illness-related stressors.
Area of Science:
- Pediatric Health
- Rare Genetic Disorders
- Psychosocial Medicine
Background:
- Barth Syndrome is a rare genetic condition affecting primarily males.
- Limited research exists on the quality of life and psychosocial functioning of pediatric patients with Barth Syndrome.
Purpose of the Study:
- To assess the quality of life and psychosocial functioning in pediatric patients with Barth Syndrome.
- To compare these outcomes with healthy male controls.
- To evaluate parental distress and parenting stress in families of children with Barth Syndrome.
Main Methods:
- Pilot study involving 34 boys with Barth Syndrome and 22 healthy male controls.
- Utilized measures of verbal ability, quality of life, loneliness, peer support, and sibling relationships.
- Parents completed assessments of distress, parenting stress, and child functioning (academic, adaptive, emotional, behavioral).
Main Results:
- Pediatric patients with Barth Syndrome reported significantly lower quality of life compared to controls.
- Children with Barth Syndrome exhibited more internalizing/externalizing symptoms, social problems, loneliness, and lower independent functioning.
- Parents of children with Barth Syndrome reported higher distress and parenting stress, with a need for academic accommodations.
Conclusions:
- Barth Syndrome significantly impacts the quality of life and psychosocial functioning of affected children.
- Families of children with Barth Syndrome experience increased parental distress and stress.
- Interventions are recommended to help children and families cope with Barth Syndrome and improve overall well-being.
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