Evaluating Sensory Processing in Fragile X Syndrome: Psychometric Analysis of the Brain Body Center Sensory Scales (BBCSS).
Jacek Kolacz, Melissa Raspa, Keri J Heilman and 1 others
PMID 29417435WHAT IT FOUND
A parent-report sensory questionnaire for people with Fragile X syndrome showed stable scores over two months and consistent ratings across auditory, visual, tactile, eating and digestive areas.
It can help describe sensory patterns, but it does not show any treatment works.
Key findings
01The sensory items formed a 6-factor solution, and the ingestive/digestive items formed a three-factor solution in the exploratory analysis.
02Caregiver ratings were stable when the same caregiver repeated the BBCSS about two months later, and secondary caregiver ratings showed fair to excellent agreement.
03People with FXS who also had ASD features or received ASD treatment had higher scores on all subscales except ingestive and digestive problems.
STILL TO COME
How it was doneWhat they foundWhat it means for OTs
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What it does not show
The study used caregiver reports only, so it did not capture the person's own experience or clinician-based assessment. ASD features were based on parent-reported behavioral items or reported treatment or services, not a clinical diagnosis. The study did not include a typically developing comparison group, so it cannot say how common these sensory scores are in the general population. The sample was mostly female caregivers (92%), white (92%), and higher income (68% at $75,000 or more), so results may not apply to more diverse families. There were too few females with full mutation FXS to test gender differences. Some subscales had low item counts, which may make scores less precise. The digestive subscale did not have a convergent validity measure. The study did not measure hearing or vision impairments, IQ, or objective autonomic function, which could influence sensory scores. The age range was broad, and age-related differences were not the main focus. The study tested questionnaire properties, not whether any sensory intervention helps.
Declared interests
The named authors declared no conflict of interest. The supplied text does not report a funding source or sponsor role.
The easy way to misread this
Do not read this as evidence that the BBCSS diagnoses a cause of sensory problems or that sensory therapy works. The study evaluated a caregiver questionnaire in people with FXS and did not test treatment or compare them with typically developing people.