Sensory Symptoms and Signs of Hyperarousal in Individuals with Fragile X Syndrome: Findings from the Forward Registry and Database Multisite Study
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| Title: | Sensory Symptoms and Signs of Hyperarousal in Individuals with Fragile X Syndrome: Findings from the Forward Registry and Database Multisite Study |
|---|---|
| Language: | English |
| Authors: | Ave M. Lachiewicz (ORCID |
| Source: | Journal of Autism and Developmental Disorders. 2024 54(11):4259-4277. |
| 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: | 19 |
| Publication Date: | 2024 |
| Sponsoring Agency: | Centers for Disease Control and Prevention (CDC) (DHHS/PHS) |
| Contract Number: | U01DD000231 U19DD000753 U01DD001189 RFADD15003 |
| Document Type: | Journal Articles Reports - Research |
| Descriptors: | Sensory Experience, Symptoms (Individual Disorders), Genetic Disorders, Arousal Patterns, Individual Characteristics, Gender Differences, Age Differences, Comorbidity, Eye Movements, Behavior Problems, Occupational Therapy, Physical Therapy, Medicine, Self Management |
| DOI: | 10.1007/s10803-023-06135-y |
| ISSN: | 0162-3257 1573-3432 |
| Abstract: | This study was designed to increase our understanding about characteristics and the impact of sensory symptoms (SS) and signs of hyperarousal (HA) in individuals with fragile X syndrome (FXS) from childhood through early adulthood and by gender. Data derived from the Fragile X Online Registry With Accessible Research Database (FORWARD), a natural history study of FXS, were analyzed using descriptive statistics and multivariate linear and logistic regression models to examine SS and signs of HA, their impact on behavioral regulation and limitations on the subject/family. The sample (N = 933) consisted of 720 males and 213 females. More males were affected with SS (87% vs. 68%) and signs of HA (92% vs. 79%). Subjects who were endorsed as having a strong sensory response had more comorbidities, including behavioral problems. The predominant SS was difficulty with eye gaze that increased with age in both genders. As individuals age, there was less use of non-medication therapies, such as occupational therapy (OT)/physical therapy (PT), but there was more use of psychopharmacological medications and investigational drugs for behaviors. Multiple regression models suggested that endorsing SS and signs of HA was associated with statistically significantly increased ABC-C-I subscale scores and limited participation in everyday activities. This study improves our understanding of SS and signs of HA as well as their impact in FXS. It supports the need for more research regarding these clinical symptoms, especially to understand how they contribute to well-known behavioral concerns. |
| Abstractor: | As Provided |
| Entry Date: | 2024 |
| Accession Number: | EJ1442765 |
| Database: | ERIC |
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| Abstract: | This study was designed to increase our understanding about characteristics and the impact of sensory symptoms (SS) and signs of hyperarousal (HA) in individuals with fragile X syndrome (FXS) from childhood through early adulthood and by gender. Data derived from the Fragile X Online Registry With Accessible Research Database (FORWARD), a natural history study of FXS, were analyzed using descriptive statistics and multivariate linear and logistic regression models to examine SS and signs of HA, their impact on behavioral regulation and limitations on the subject/family. The sample (N = 933) consisted of 720 males and 213 females. More males were affected with SS (87% vs. 68%) and signs of HA (92% vs. 79%). Subjects who were endorsed as having a strong sensory response had more comorbidities, including behavioral problems. The predominant SS was difficulty with eye gaze that increased with age in both genders. As individuals age, there was less use of non-medication therapies, such as occupational therapy (OT)/physical therapy (PT), but there was more use of psychopharmacological medications and investigational drugs for behaviors. Multiple regression models suggested that endorsing SS and signs of HA was associated with statistically significantly increased ABC-C-I subscale scores and limited participation in everyday activities. This study improves our understanding of SS and signs of HA as well as their impact in FXS. It supports the need for more research regarding these clinical symptoms, especially to understand how they contribute to well-known behavioral concerns. |
|---|---|
| ISSN: | 0162-3257 1573-3432 |
| DOI: | 10.1007/s10803-023-06135-y |
