Improving Developmental Abilities in Infants With Tuberous Sclerosis Complex: A Pilot Behavioral Intervention Study.
Nicole M McDonald, Carly Hyde, April Boin Choi and 4 others
PMID 32467653WHAT IT FOUND
Scores changed unevenly in five infants with tuberous sclerosis complex who completed a 12-week parent-mediated JASPER program, with controlled seizures and variable outside services such as speech therapy.
This small single-group pilot cannot show JASPER caused the changes.
Key findings
01Five children with tuberous sclerosis complex, aged 13 to 45 months at first assessment, received a 12-week parent-mediated JASPER program focused on joint engagement, joint attention, and play skills.
02The five children's MSEL profiles changed unevenly, with increases in some domains and stability or decreases in others.
03Three additional participants were not included because of incomplete participation related to difficulty visiting the treatment sites on a weekly basis.
STILL TO COME
How it was doneWhat they foundWhat it means for SLPs
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What it does not show
The study analyzed only five children, and three additional enrolled children did not complete required assessments or the entire intervention protocol, so the sample is very small and incomplete. The supplied text describes a single-group pilot intervention, so changes cannot be compared with what would have happened without the intervention. The authors used a qualitative, case-by-case description of MSEL changes rather than a group statistical test, so the result does not establish an effect size or a reliable average change. Several children had missing visits, including Case 1 missing postassessment and Case 5 missing follow-up, so the pattern across all time points is not complete. Children also had variable outside intervention hours, such as speech therapy ranging from 0.25 to 4 hr/week, and seizures were controlled during the study, so the contribution of JASPER alone cannot be separated. The families were highly educated, which may reflect a selection bias toward families with enough resources to travel and participate weekly. The intervention required in-person weekly sessions across a large geographic area, which may limit how easily the program can be used in routine practice. ADOS module changes for one child, and different baseline severity across children, make simple comparisons of score changes difficult.
Declared interests
The supplied text does not report funding or conflicts of interest.
The easy way to misread this
Do not read the children's MSEL gains as evidence that JASPER caused them. The study analyzed five children in a single-group pilot, and the children also had variable outside intervention hours, such as speech therapy, and controlled seizures, so the contribution of JASPER cannot be separated.