The following are comments for families and caregivers on Cogmed as an intervention for memory and attention in Fragile X syndrome by the members of the National Fragile X Foundation’s Clinical Trials Committee
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. Dr. Joseph Piven provides a family-friendly summary of the study that was published in the Journal of Neurodevelopmental Disorders. We encourage the reader to review his summary here.
Although overall children with fragile X syndrome in the study improved during the course of the intervention, it is not yet clear whether the intervention itself, Cogmed, or other factors contributed to these gains in cognition and behavior. See Dr. Piven’s article for an explanation of this. Therefore, caregivers may be asking: Should I consider Cogmed as an intervention for my child? We aim to help answer this question.
The reader should be aware that Cogmed, and other cognitive training programs, have been shown to be effective in improving memory, attention, and behavior in many prior studies, such as in children with ADHD. However, other studies have suggested that the benefits don’t extend beyond the domain of memory (which is the trained area), for example to learning in school, improving overall IQ, or reducing behavior problems. Another study showed that Cogmed is likely beneficial for children with Down syndrome (Bennett et al, 2013).
Therefore, the backdrop of the fragile X Cogmed study is that the evidence is mixed for children without fragile X, and there is some controversy in the field generally about this type of training. Our interpretation of the fragile X study specifically, however, is that the children did improve, and that those improvements were not likely to be placebo or practice effects, but rather attributable to some aspect of the intervention (potentially Cogmed, improved parent-child engagement, general benefits of staying seated, focusing on a task, and resisting distractions, or a combination of these).
Cogmed is safe, as compared to some medications which have risks of side effects or other educational/computer based instructional programs. However, it is possible that if you try Cogmed, your child might become frustrated by the challenge, become bored, or not understand it well enough to benefit. Still, with guidance from you or a trained aide, and coaching from a therapist, learning how to press on and manage these problems is therapeutic and of value.
Not all children with fragile X have the baseline cognitive level to engage in the training; you may need assistance from the provider or your fragile X clinic to determine whether he or she is a good candidate. Generally speaking, a developmental level of at least 4 or 5 years is needed as a rule of thumb. Very young children with the full mutation (under perhaps 7- 8 years) are much less likely to be able to participate meaningfully. As a point of reference, the children in this study were between 8-19 years old (average was 12) and had mental ages averaging about 7 years, with a range from 2.5 years and up.
How do I get Cogmed training for my child? Cogmed is provided by a certified clinician, usually a psychologist, or special educator. A clinician charges a fee for providing the training, as they would for other types of therapy they might provide. They would need to do screening for working memory problems and a baseline assessment in their clinic, and then meet with the family prior to starting Cogmed. The clinician would have weekly, approximately, 30-60 minute telephone calls with families, and then another in-clinic meeting at the culmination of the 5-7 weeks of training, and ideally a follow-up assessment after about 6 months to see if any benefits are maintained. This equates to about 10 hours of clinician time. Insurance does not specifically cover Cogmed training, but it might be possible for a clinician to work it into a broader treatment plan that might be covered depending on your insurance.
Also, Cogmed could be provided in the school setting, likely delivered by a special educator or aide who has been trained and certified. This would have to be negotiated through the IEP process in the public-school setting. It should be emphasized that there is no guarantee that your child will benefit and show behavioral and cognitive improvement. You, your medical provider, and your school can contact Pearson directly for the latest pricing information at: website, 888-748-3828, or firstname.lastname@example.org.
The authors are aware that the expense of an intervention that has mixed results, and may not result in your child’s improvement, is concerning. Nonetheless, the NFXF believes it is important to make families aware of all interventions that are evidence-based, and those that are possibly effective but need further research.
Cogmed and other emerging drug and non-drug therapies may often be best viewed as an addition to, rather than as a replacement for, traditional therapies like speech and language, occupational therapy, physical therapy, etc. Multiple simultaneous approaches to treatment are generally the best approach given our current evidence.
We strongly encourage the potential Cogmed provider to contact Dr. Hessl’s research team regarding questions about implementing the training for children with fragile X, or at least consult the published article before starting therapy.
Email David Hessl at drhessl@UCDAVIS.EDU
The NFXF Clinical Trials Committee is a team of Fragile X professionals and NFXF staff who function under confidential agreements and consult with industry about clinical trials.