Sensory Symptoms and Signs of Hyperarousal in Individuals with Fragile X Syndrome: Findings from the FORWARD Registry and Database Multisite Study.
Ave M Lachiewicz, Tracy M Stackhouse, Kristin Burgess and 5 others
PMID 37840096WHAT IT FOUND
Sensory symptoms and hyperarousal are highly prevalent in Fragile X Syndrome, affecting 87% of males and 68% of females.
These issues significantly restrict participation in daily activities. Despite this, sensory-specific treatments like sensory integration therapy are used in less than 20% of cases.
Key findings
01Sensory symptoms were reported in 87% of males and 68% of females, while signs of hyperarousal were reported in 92% of males and 79% of females.
02Sensory problems and hyperarousal restricted participation in everyday activities for 74% of males and 50% of females.
03Only 19% of clinicians endorsed the use of sensory integration therapy and 10% endorsed the use of a sensory diet, despite high prevalence of symptoms.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTsWhat it means for SLPs
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What it does not show
The questions used to assess sensory symptoms and hyperarousal were not validated prior to use. The study combined Occupational Therapy and Physical Therapy into a single category, making it impossible to distinguish the specific role of each discipline. The sample likely represents moderately impaired individuals, as those with milder symptoms may not seek specialty care and those with severe behavioral issues may be difficult to bring to clinics. Multiple family members were allowed to participate, which may have affected the statistical independence of the observations.
Declared interests
The study was funded by the Centers for Disease Control and Prevention, Civitans East, the Don Bower Fund, and Knights of Columbus Operation Lamb.
The easy way to misread this
Do not assume that occupational therapy or physical therapy services automatically include sensory-specific treatment. The study shows that while 44% received OT/PT, only 19% received sensory integration therapy and 10% used a sensory diet, meaning most patients in therapy are not receiving targeted interventions for their sensory symptoms.