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23-04-2024 | Original Article

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

Auteurs: Amrita Minhas, Kerri Whitlock, Cory Rosenfelt, Julie Shatto, Brittany Finlay, Jennifer Zwicker, Sarah Lippe, Sebastien Jacquemont, Randi Hagerman, Kara Murias, Francois V. Bolduc

Gepubliceerd in: Journal of Autism and Developmental Disorders

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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.
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Literatuur
go back to reference Budimirovic, D. B., Protic, D. D., Delahunty, C. M., Andrews, H. F., Choo, T.-H., Xu, Q., Berry-Kravis, E., Kaufmann, W. E., & FORWARD Consortium. (2022). Sleep problems in fragile X syndrome: Cross-sectional analysis of a large clinic-based cohort. American Journal of Medical Genetics. Part A, 188(4), 1029–1039. https://doi.org/10.1002/ajmg.a.62601CrossRef Budimirovic, D. B., Protic, D. D., Delahunty, C. M., Andrews, H. F., Choo, T.-H., Xu, Q., Berry-Kravis, E., Kaufmann, W. E., & FORWARD Consortium. (2022). Sleep problems in fragile X syndrome: Cross-sectional analysis of a large clinic-based cohort. American Journal of Medical Genetics. Part A, 188(4), 1029–1039. https://​doi.​org/​10.​1002/​ajmg.​a.​62601CrossRef
go back to reference Coffman, M. C., Shaffer, R. C., Schmitt, L. M., Dominick, K. C., Pedapati, E., Wang, A., Berry-Kravis, E., Tartaglia, N., & Erickson, C. A. (2020). Examination of correlates to health-related quality of life in individuals with Fragile X Syndrome. Brain Sciences, 10(4). https://doi.org/10.3390/brainsci10040213 Coffman, M. C., Shaffer, R. C., Schmitt, L. M., Dominick, K. C., Pedapati, E., Wang, A., Berry-Kravis, E., Tartaglia, N., & Erickson, C. A. (2020). Examination of correlates to health-related quality of life in individuals with Fragile X Syndrome. Brain Sciences, 10(4). https://​doi.​org/​10.​3390/​brainsci10040213​
go back to reference Darchia, N., Oniani, N., Sakhelashvili, I., Supatashvili, M., Basishvili, T., Eliozishvili, M., Maisuradze, L., & Cervena, K. (2018). Relationship between sleep disorders and health related quality of life-results from the Georgia SOMNUS study. International Journal of Environmental Research and Public Health, 15(8). https://doi.org/10.3390/ijerph15081588 Darchia, N., Oniani, N., Sakhelashvili, I., Supatashvili, M., Basishvili, T., Eliozishvili, M., Maisuradze, L., & Cervena, K. (2018). Relationship between sleep disorders and health related quality of life-results from the Georgia SOMNUS study. International Journal of Environmental Research and Public Health, 15(8). https://​doi.​org/​10.​3390/​ijerph15081588
go back to reference Delahaye, J., Kovacs, E., Sikora, D., Hall, T. A., Orlich, F., Clemons, T. E., van der Weerd, E., Glick, L., & Kuhlthau, K. (2014). The relationship between health-related quality of life and sleep problems in children with autism spectrum disorders. Research in Autism Spectrum Disorders, 8(3), 292–303. https://doi.org/10.1016/j.rasd.2013.12.015CrossRef Delahaye, J., Kovacs, E., Sikora, D., Hall, T. A., Orlich, F., Clemons, T. E., van der Weerd, E., Glick, L., & Kuhlthau, K. (2014). The relationship between health-related quality of life and sleep problems in children with autism spectrum disorders. Research in Autism Spectrum Disorders, 8(3), 292–303. https://​doi.​org/​10.​1016/​j.​rasd.​2013.​12.​015CrossRef
go back to reference Kenworthy, L., Verbalis, A., Bascom, J., daVanport, S., Strang, J. F., Pugliese, C., Freeman, A., Jeppsen, C., Armour, A. C., Jost, G., Hardy, K., & Wallace, G. L. (2022). Adding the missing voice: How self-report of autistic youth self-report on an executive functioning rating scale compares to parent report and that of youth with attention deficit hyperactivity disorder or neurotypical development. Autism: The International Journal of Research and Practice, 26(2), 422–433. https://doi.org/10.1177/13623613211029117 Kenworthy, L., Verbalis, A., Bascom, J., daVanport, S., Strang, J. F., Pugliese, C., Freeman, A., Jeppsen, C., Armour, A. C., Jost, G., Hardy, K., & Wallace, G. L. (2022). Adding the missing voice: How self-report of autistic youth self-report on an executive functioning rating scale compares to parent report and that of youth with attention deficit hyperactivity disorder or neurotypical development. Autism: The International Journal of Research and Practice, 26(2), 422–433. https://​doi.​org/​10.​1177/​1362361321102911​7
go back to reference Lord, C., Risi, S., Lambrecht, L., Cook, E. H., Leventhal, B. L., DiLavore, P. C., Pickles, A., & Rutter, M. (2000). The Autism Diagnostic Observation Schedule—generic: A standard measure of social and communication deficits associated with the spectrum of autism. Journal of Autism and Developmental Disorders, 30(3), 205–223. https://doi.org/10.1023/A:1005592401947CrossRefPubMed Lord, C., Risi, S., Lambrecht, L., Cook, E. H., Leventhal, B. L., DiLavore, P. C., Pickles, A., & Rutter, M. (2000). The Autism Diagnostic Observation Schedule—generic: A standard measure of social and communication deficits associated with the spectrum of autism. Journal of Autism and Developmental Disorders, 30(3), 205–223. https://​doi.​org/​10.​1023/​A:​1005592401947CrossRefPubMed
go back to reference Lozano, R., Thompson, T., Dixon-Weber, J., Erickson, C. A., Berry-Kravis, E., Williams, S., Smith, E., Frazier, J. A., Rosselot, H., Farmer, C., & Hessl, D. (2022). Observable symptoms of anxiety in individuals with Fragile X Syndrome: Parent and caregiver perspectives. Genes, 13(9). https://doi.org/10.3390/genes13091660 Lozano, R., Thompson, T., Dixon-Weber, J., Erickson, C. A., Berry-Kravis, E., Williams, S., Smith, E., Frazier, J. A., Rosselot, H., Farmer, C., & Hessl, D. (2022). Observable symptoms of anxiety in individuals with Fragile X Syndrome: Parent and caregiver perspectives. Genes, 13(9). https://​doi.​org/​10.​3390/​genes13091660
go back to reference McStay, R. L., Dissanayake, C., Scheeren, A., Koot, H. M., & Begeer, S. (2014). Parenting stress and autism: The role of age, autism severity, quality of life and problem behaviour of children and adolescents with autism. Autism: The International Journal of Research and Practice, 18(5), 502–510. https://doi.org/10.1177/1362361313485163 McStay, R. L., Dissanayake, C., Scheeren, A., Koot, H. M., & Begeer, S. (2014). Parenting stress and autism: The role of age, autism severity, quality of life and problem behaviour of children and adolescents with autism. Autism: The International Journal of Research and Practice, 18(5), 502–510. https://​doi.​org/​10.​1177/​1362361313485163​
go back to reference Reinfjell, T., Hjemdal, O., Aune, T., Vikan, A., & Diseth, T. H. (2008). The Pediatric Quality of Life Inventory (PedsQL) 4.0 as an assessment measure for depressive symptoms: a correlational study with young adolescents. Nordic Journal of Psychiatry, 62(4), 279–286. https://doi.org/10.1080/08039480801983950 Reinfjell, T., Hjemdal, O., Aune, T., Vikan, A., & Diseth, T. H. (2008). The Pediatric Quality of Life Inventory (PedsQL) 4.0 as an assessment measure for depressive symptoms: a correlational study with young adolescents. Nordic Journal of Psychiatry, 62(4), 279–286. https://​doi.​org/​10.​1080/​0803948080198395​0
go back to reference Woodford, E. C., McLay, L., Blampied, N. M., France, K. G., Gibbs, R., Whitaker, C., & McCaughan, E. (2022). Less restrictive behavioral interventions for sleep problems in children with neurodevelopmental disorders: A single case feasibility study. Journal of Developmental and Physical Disabilities. https://doi.org/10.1007/s10882-022-09872-7CrossRef Woodford, E. C., McLay, L., Blampied, N. M., France, K. G., Gibbs, R., Whitaker, C., & McCaughan, E. (2022). Less restrictive behavioral interventions for sleep problems in children with neurodevelopmental disorders: A single case feasibility study. Journal of Developmental and Physical Disabilities. https://​doi.​org/​10.​1007/​s10882-022-09872-7CrossRef
Metagegevens
Titel
Analyzing the Quality of Life in Individuals with Fragile X Syndrome in Relation to Sleep and Mental Health
Auteurs
Amrita Minhas
Kerri Whitlock
Cory Rosenfelt
Julie Shatto
Brittany Finlay
Jennifer Zwicker
Sarah Lippe
Sebastien Jacquemont
Randi Hagerman
Kara Murias
Francois V. Bolduc
Publicatiedatum
23-04-2024
Uitgeverij
Springer US
Gepubliceerd in
Journal of Autism and Developmental Disorders
Print ISSN: 0162-3257
Elektronisch ISSN: 1573-3432
DOI
https://doi.org/10.1007/s10803-024-06317-2