Authors: Scott S. Hall, Katerina D. Monlux, Arlette Bujanda Rodriguez, Booil Jo, and Joy S. Pollard

Summary

Dr. Hall and his team at Stanford University are learning about potential behavioral treatments for problem behaviors. Previous research suggests that problem behaviors, like aggression, self-injury, and property destruction, may occur at higher rates in individuals with FXS. These problems can lead to stress for the individual and their family. While medications have been used to try and help manage these behaviors, there is evidence that behavioral interventions may also help.

One type of behavioral treatment is functional communication training (FCT). FCT focuses on making sure the problem behavior is not reinforced while teaching the individual to engage in an alternative communicative behavior to get their point across. For example, if the individual typically engages in problem behavior to avoid completing an activity, the treatment would focus on teaching the individual to communicate appropriately that they would like to take a break, but otherwise making sure that the activity is completed.

This type of behavioral treatment may be challenging for families to obtain due to difficulties involved in traveling to a clinic or having a qualified professional deliver in-home treatment in rural or underserved areas of the country. The Stanford team recognized this, and designed their trial to compare children with FXS who received FCT via telehealth to those who received treatment as usual, or no FCT. Behavioral treatment for children with FXS via telehealth, if shown to be effective, could therefore significantly improve outcomes for children with FXS and their families.

In their study, Dr. Hall and his colleagues included 57 boys with FXS between the ages of 3 and 10, who displayed problem behaviors on a daily basis. Children were randomized to receive FCT via telehealth (n = 30) or no FCT (n = 27) over 12 weeks. In-session observations of problem behavior conducted throughout the study, along with several parent-report measures were used to capture changes in behavior.

Prior to beginning treatment, a board certified behavior analyst (BCBA) conducted a functional analysis (FA) of the child’s problem behaviors within the child’s home to determine the reasons (or “functions”) for the child’s problem behavior. The treatment protocol was then tailored to target those functions. Each telehealth treatment session was 1 hour long, and telehealth sessions were initially administered up to five days per week, then tapered to weekly sessions, depending on progress. The caregiver received coaching from the BCBA, highlighting immediate and continuous reinforcement each time their child engaged in the appropriate communicative response to strengthen the child’s appropriate response.

Overall, 24 of the 30 families enrolled in the treatment group completed the FCT treatment. Very few technology issues or rescheduling of appointments occurred. A comparison of the groups indicated that the FCT group showed significantly greater improvement compared to the group that did not receive FCT. There was significant improvement in problem behaviors in the group receiving FCT, as evidenced by direct observations from the BCBA in sessions and the parent report measures. Additional improvements were reported in irritability, stereotypic behaviors, and hyperactivity/non-compliance. Importantly, the data showed that parent treatment fidelity — or parent dedication and effectiveness of performing the treatment — was associated with greater decreases in problem behavior. These results suggest that FCT delivered via telehealth can result in significant reductions in problem behavior displayed by children with FXS — all from their own home!

Why This Matters

Problem behaviors can be a challenge for individuals with FXS and their families. Behavioral treatments can be a challenge to deliver due to difficulties in traveling to a clinic or availability of a qualified professional for in-home treatment. This study provides evidence that delivering behavioral treatment, specifically FCT, via telehealth can be effective and reproducible. This means that FCT and other behavioral interventions may be able to be delivered virtually while still making a big difference in the lives of individuals with FXS and their families. The ability to administer behavioral treatments via telehealth may improve the outcomes for children with FXS by reducing problem behaviors and parental stress while potentially reduce healthcare costs and improving access to treatment.

Next Steps

This study focused on administering a targeted behavioral approach, based on behavior analytic principles, for treating problem behavior using a telehealth-based delivery model. This process is fairly different than other treatment models. Additional research needs to be done to further test the telehealth model for behavioral treatment delivery.

Acknowledgements: The Stanford team stated their gratitude for the participants and families who gave up their time to take part in this study.

Funding: This research was supported by a Developmental Disabilities Translational Research Program Award from The John Merck Fund.

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