Assessment and Treatment of Behavior Problems in TSC at Preschool Age: A Telehealth Approach
Abstract
Individuals with tuberous sclerosis complex (TSC) often experience difficulties with managing their behavior and emotions, which can get in the way of learning, making friends, and the day-to-day functioning within a family. Disruptive behaviors, such as hyperactivity, noncompliance, and aggression, are also associated with increased parenting stress in caregivers of children with TSC. Teaching parents strategies for managing the behavior of children with these challenges has been shown to help children learn to listen better and parents to feel less stressed, and can lead to increased closeness and warmth within the parent-child relationship. While there are effective behavioral treatments for child disruptive behavior available, none of these have been tested in children with TSC. It is important to test these treatments in children with TSC, as they have unique medical and neurodevelopmental needs that may require changes to the standard treatment protocol to make sure they work for children with TSC and their families. This study is a first step toward that goal. We will first assess how often behavior problems occur in children with TSC and how they may relate to aspects of family functioning, like the quality of parent-child interactions and parenting stress levels. We will focus on the preschool age period, from age 3 to 6 years old, which is when these disruptive behaviors may begin to cause problems but remain sensitive to change. Using the information from the assessment, we will then test whether a well-known treatment for disruptive behavior in children, Parent-Child Interaction Therapy, or PCIT, is helpful in a group of children with TSC who also have elevated behavior problems. It can be difficult for families of children with rare disorders like TSC to access assessment and treatment when it requires trips to major medical centers that come with significant costs and time commitment. We have thus designed our study to be done completely from home using an internet-based assessment and treatment delivery system. In this way, we hope that families are more easily able to participate in this study and that study results can be more quickly applied to the broader TSC community. The treatment we have chosen to study, PCIT, is particularly well suited to internet-based delivery. PCIT has a parent-mediated model in which the therapist teaches and then provides real-time feedback and coaching while parents play with their child to facilitate skill learning. Previous studies and our preliminary data show that PCIT often works just as well when delivered over the internet vs. in person, while making it easier for families to attend and complete treatment. To learn about whether PCIT helps children with TSC and their families, we will compare changes over a 6-month period in children who receive PCIT right away vs. those who enter a 6-month waitlist. In the end, all of the children in the intervention study will receive PCIT, allowing us to learn from the whole group about what parents thought about the treatment and use of technology, what modifications needed to be made to make PCIT appropriate for children with TSC, and for which children PCIT was most helpful. Ultimately, it is our goal to apply the information learned from this study as quickly as possible to improve the clinical care and support available to families of children with TSC who are having difficulties with managing their child’s behaviors. In the shorter term, we plan to share our methods and results with TSC providers and the larger TSC community through national talks and publications in both lay and scientific outlets to ensure that what we learn is available to the people who need it most. Longer term, we expect to apply what we learned from this preliminary clinical trial to a larger study testing an adapted version of internet-delivered PCIT for children with TSC. If successful, this treatment can then be taught to PCIT providers across t
Document Details
- Document Type
- DoD Grant Award
- Publication Date
- Dec 28, 2022
- Source ID
- W81XWH2210250
Entities
People
- Nicole M McDonald
Organizations
- United States Army
- University of California, Los Angeles