ArticleJournal of child neurology2025
Experiences and Hope in Caregivers of Children With Aicardi Goutières Syndrome.
Article in Journal of child neurology, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 4 papers.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
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Who cites it
4 citing papers in PubMed.
- When R-Loops Go Awry: Genome Instability and Neurological Diseases.The European journal of neuroscience · 2026Review
- Design of a Pediatric Low Motor Function Item Battery in leukodystrophies.Molecular genetics and metabolism · 2026Article
- A novel patient-Centered approach to clinical trial readiness in rare diseases: Application in Aicardi-Goutières Syndrome (AGS).Molecular genetics and metabolism · 2026Article
- Hope level of primary caregivers of children with epilepsy: current status and influencing factors.Frontiers in pediatrics · 2025Article
Corrections and comments
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Authors and funding
11 authors.
Funding
Abstract
Aicardi Goutières syndrome is a type I interferonopathy that results in a spectrum of neurologic impairment. In general, neurodegenerative disorders of childhood strongly affect the quality of life and perspective of the whole caregiver network. This article aims to define the impact of Aicardi Goutières syndrome on affected individuals and families through a multimethod approach using quality of life surveys and qualitative interviews.Qualitative interviews (n = 45) and quality of life questionnaires, including the Pediatric Quality of Life-Generic Core (PedsQL-GC, n = 46) and Family Impact (PedsQL-FI, n = 45) modules, Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD, n = 30), and Caregiver Traumatic Brain Injury (TBI)-CareQoL (n = 37), were administered to caregivers of children with Aicardi Goutières syndrome. The open-ended interviews with guided questions addressed the caregivers' perception of Aicardi Goutières syndrome and determinants of quality of life. Interviews were conducted until thematic saturation and qualitative analyses generated salient themes. Per quality of life questionnaires, motor abilities and activities of daily living were more impaired compared with other domains (Comfort and Emotion, Psychosocial Health, [mixed effect analysis with Bonferroni correction,
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Registered trials
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