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Analyzing the Quality of Life in Individuals with Fragile X Syndrome in Relation to Sleep and Mental Health

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Title: Analyzing the Quality of Life in Individuals with Fragile X Syndrome in Relation to Sleep and Mental Health
Language: English
Authors: Amrita Minhas (ORCID 0009-0008-9331-7790), Kerri Whitlock (ORCID 0000-0002-8032-4587), Cory Rosenfelt (ORCID 0000-0003-1422-4411), Julie Shatto, Brittany Finlay, Jennifer Zwicker, Sarah Lippe, Sebastien Jacquemont, Randi Hagerman, Kara Murias, Francois V. Bolduc (ORCID 0000-0002-6109-5467)
Source: Journal of Autism and Developmental Disorders. 2025 55(5):1910-1922.
Availability: Springer. Available from: Springer Nature. One New York Plaza, Suite 4600, New York, NY 10004. Tel: 800-777-4643; Tel: 212-460-1500; Fax: 212-460-1700; e-mail: customerservice@springernature.com; Web site: https://link.springer.com/
Peer Reviewed: Y
Page Count: 13
Publication Date: 2025
Document Type: Journal Articles
Reports - Research
Descriptors: Genetic Disorders, Mental Health, Sleep, Symptoms (Individual Disorders), Adjustment (to Environment), Physical Health, Interpersonal Competence, Quality of Life
Assessment and Survey Identifiers: Vineland Adaptive Behavior Scales, Autism Diagnostic Observation Schedule
DOI: 10.1007/s10803-024-06317-2
ISSN: 0162-3257
1573-3432
Abstract: The purpose of this paper was to examine the physical, emotional, social and school functioning domains of quality of life of individuals with Fragile X Syndrome, in relation to mental health and sleep patterns to gain a better understanding of how these aspects are affected by the disorder. This study included 119 individuals with Fragile X Syndrome who were given different cognitive examinations by a neuropsychologist or by parent-proxy questionnaires. This study focused on the Pediatric Quality of Life Inventory (PedsQoL), the Anxiety, Depression and Mood Scale (ADAMS), the Children's Sleep Habits Questionnaire (CSHQ), but did include other cognitive tests (Vineland Adaptive Behaviour Scales, Nonverbal IQ, Autism Diagnostic Observation Schedule). We identified significant associations between decreases in emotional, social and school domains of PedsQoL and the ADAMS subtests of Generalized Anxiety, Manic/Hyperactivity and Obsessive/Compulsivity, with the subtest of Depressed Mood having associations with lower physical and emotional domains. We also identified a significant impact between CSHQ subtests of Sleep Anxiety, Night Wakings, Daytime Sleepiness, and Parasomnia with the emotional and school domains of PedsQoL. There were associations connecting school functioning with Bedtime Resistance, and additional associations connecting emotional functioning with Sleep Duration and Sleep Onset Delay. Physical functioning was also associated with Sleep Anxiety. Our study shows how mental health and sleep defects impact improper sleep patterns and mental health which leads to decreases in the quality of life for individuals with FXS, and how it is important to screen for these symptoms in order to alleviate issues.
Abstractor: As Provided
Entry Date: 2025
Accession Number: EJ1468784
Database: ERIC
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  Data: <searchLink fieldCode="AR" term="%22Amrita+Minhas%22">Amrita Minhas</searchLink> (ORCID <externalLink term="http://orcid.org/0009-0008-9331-7790">0009-0008-9331-7790</externalLink>)<br /><searchLink fieldCode="AR" term="%22Kerri+Whitlock%22">Kerri Whitlock</searchLink> (ORCID <externalLink term="http://orcid.org/0000-0002-8032-4587">0000-0002-8032-4587</externalLink>)<br /><searchLink fieldCode="AR" term="%22Cory+Rosenfelt%22">Cory Rosenfelt</searchLink> (ORCID <externalLink term="http://orcid.org/0000-0003-1422-4411">0000-0003-1422-4411</externalLink>)<br /><searchLink fieldCode="AR" term="%22Julie+Shatto%22">Julie Shatto</searchLink><br /><searchLink fieldCode="AR" term="%22Brittany+Finlay%22">Brittany Finlay</searchLink><br /><searchLink fieldCode="AR" term="%22Jennifer+Zwicker%22">Jennifer Zwicker</searchLink><br /><searchLink fieldCode="AR" term="%22Sarah+Lippe%22">Sarah Lippe</searchLink><br /><searchLink fieldCode="AR" term="%22Sebastien+Jacquemont%22">Sebastien Jacquemont</searchLink><br /><searchLink fieldCode="AR" term="%22Randi+Hagerman%22">Randi Hagerman</searchLink><br /><searchLink fieldCode="AR" term="%22Kara+Murias%22">Kara Murias</searchLink><br /><searchLink fieldCode="AR" term="%22Francois+V%2E+Bolduc%22">Francois V. Bolduc</searchLink> (ORCID <externalLink term="http://orcid.org/0000-0002-6109-5467">0000-0002-6109-5467</externalLink>)
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  Data: The purpose of this paper was to examine the physical, emotional, social and school functioning domains of quality of life of individuals with Fragile X Syndrome, in relation to mental health and sleep patterns to gain a better understanding of how these aspects are affected by the disorder. This study included 119 individuals with Fragile X Syndrome who were given different cognitive examinations by a neuropsychologist or by parent-proxy questionnaires. This study focused on the Pediatric Quality of Life Inventory (PedsQoL), the Anxiety, Depression and Mood Scale (ADAMS), the Children's Sleep Habits Questionnaire (CSHQ), but did include other cognitive tests (Vineland Adaptive Behaviour Scales, Nonverbal IQ, Autism Diagnostic Observation Schedule). We identified significant associations between decreases in emotional, social and school domains of PedsQoL and the ADAMS subtests of Generalized Anxiety, Manic/Hyperactivity and Obsessive/Compulsivity, with the subtest of Depressed Mood having associations with lower physical and emotional domains. We also identified a significant impact between CSHQ subtests of Sleep Anxiety, Night Wakings, Daytime Sleepiness, and Parasomnia with the emotional and school domains of PedsQoL. There were associations connecting school functioning with Bedtime Resistance, and additional associations connecting emotional functioning with Sleep Duration and Sleep Onset Delay. Physical functioning was also associated with Sleep Anxiety. Our study shows how mental health and sleep defects impact improper sleep patterns and mental health which leads to decreases in the quality of life for individuals with FXS, and how it is important to screen for these symptoms in order to alleviate issues.
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