Trajectories of Change in the Behavioral and Health Phenotype of Adolescents and Adults with Fragile X Syndrome and Intellectual Disability: Longitudinal Trends Over a Decade.
Lauren V Usher, Leann S DaWalt, Jinkuk Hong and 2 others
PMID 32040800WHAT IT FOUND
Daily living skills improved through adolescence but plateaued or declined in the 30s.
Behavior problems decreased overall but remained clinically significant for many. BMI and health conditions increased steadily over the decade. Higher autism symptoms predicted worse starting independence and behavior.
Key findings
01Daily living skills increased during adolescence and early adulthood but showed a plateau or decline in the 30s and beyond.
02Behavior problems decreased over time, but nearly one-third of the sample remained above the clinical cutoff throughout the decade.
03BMI and the number of health conditions increased linearly over the study period.
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
All data were reported by mothers, introducing potential reporter bias. The sample was too small to analyze individuals without intellectual disability separately, limiting generalizability to that group. The number of female participants was small, limiting conclusions about sex differences. Findings regarding older age trends are based on a small number of participants over 40. There was no control group, so changes cannot be definitively attributed to FXS alone versus general aging trends.
Declared interests
The authors declared no conflicts of interest.
The easy way to misread this
Do not assume that the decrease in behavior problems means they are resolved. Nearly one-third of the sample remained above the clinical cutoff for behavior problems throughout the decade, indicating a persistent need for behavioral support in adulthood.