By Dr. Joseph Piven
A research team from the University of California at Davis MIND Institute recently published findings from a study using a computer program called Cogmed to train memory, flexible thinking, and attention in children and adolescents with Fragile X Syndrome. Referred to as ‘executive function’ – memory, flexible thinking, controlling impulses, and attention are problems characteristic of individuals with Fragile X Syndrome. The computer program was employed with 100 children and adolescents with Fragile X Syndrome – presenting them with challenging visual and auditory tasks involving memory and attention and challenging them to think flexibly in order to complete those tasks.
Training was conducted in the child’s home, five days a week, for five to six weeks, with 20-25 sessions in total. Parents served as the memory training aide, helping their children stay on task and motivated, by using various reinforcement strategies. The UC Davis team provided a certified training coach to the parents, and this coach was available by phone.
Two different approaches were used. Half of the children in the study (group 1) were trained with a program that continuously increased the difficulty of the tasks as they improved with training – this is the publically-available version of Cogmed. The other half of the sample (group 2, the “control” group) received training on the same tasks but the tasks remained constant in level of difficulty over the entire 20-25 sessions of the study. To see if their abilities had improved with the training, at the end of the training period all children in both groups were tested on standard tests of executive function ability; the parents and teachers were also asked to report on their observations about the children’s behavior.
The question posed by the research team was whether the first group of children receiving the more challenging training program would perform better than the second group at the end of the training period. The first group was considered to be receiving the more active intervention, whereas those in group two were considered the comparison or control group. At the end of the training subjects in both groups showed significant improvement in their executive function ability, however there was no difference in the improvement between the two groups (i.e., those in group 1 did not show significantly better outcome for executive function ability or behavior than those in group 2). Testing three months after the training was completed showed that the same level of improvement was maintained in both groups.
Since both the group receiving the more ‘active intervention’ and the ‘control group’ improved, the results were difficult to clearly interpret. Could improvement in both groups simply have been due to the so-called placebo effect (i.e., a beneficial effect due to a treatment that cannot be directly attributed to the properties of the treatment itself but instead is thought to be due to indirect psychological effects on the subject)? Or, could it be that both training strategies, even the one that was less challenging, improved the executive function ability and behavior, with this improvement directly tied to the specific intervention administered?
The fact that improvement was maintained three months after the intervention was stopped may support the latter idea, i.e., that the specific qualities of the training had a direct and lasting impact in both conditions. Also, it is interesting that teachers also reported significant improvements in classroom behavior in both groups – and the teachers were not aware (“blind”) of the specific aims of the study. The researchers considered the idea that if they had added a third group, children administered a more passive intervention (e.g., being placed on a waiting list for treatment but not actually receiving treatment), and if that group had shown no effect from the waiting list ‘intervention’, they would have had support for the idea that both training programs were effective.
Overall, the positive impact of the intervention, albeit not as clear a result as the authors had hoped for, is very promising and suggests that home-based, computer training programs for executive function could prove to be an important treatment for the memory and attention problems in individuals with Fragile X Syndrome. But clearly more work needs to be done before such an intervention can be recommended by clinicians for incorporation into the treatment regimen for individuals with Fragile X Syndrome.
If you are a parent/caregiver and are wondering if this is something you should pursue, read the NFXF’s Clinical Trial Committee’s memo to families.
Hessl D, Schweitzer JB, Nguyen DV, McLennan YA, Johnston C, Shickman R, Chen Y. Cognitive training for children and adolescents with fragile X syndrome: a randomized controlled trial of Cogmed. J Neurodevelopmental Disorders. 2019 Apr 15;11(1):4. PMID: 30982467
Funding: The research was supported by the John Merck Fund Developmental Disabilities Translational Research Program.
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About the author: Dr. Joseph Piven is the Thomas E. Castelloe Distinguished Professor of Psychiatry, Pediatrics and Psychology and Director of the Carolina Institute for Developmental Disabilities