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Published on: July 10, 2017
Behavior problems in children with tuberous sclerosis complex and parental stress
Claudine M C Kopp1, David A Muzykewicz, Brigid A Staley
1Department of Neurology, Massachusetts General Hospital, Boston, MA 02114, USA.
Insights
Behavioral problems are common in children with tuberous sclerosis complex (TSC). Management should include behavioral interventions and monitoring of parental stress due to high prevalence in pediatric patients.
Area of Science:
- Neuroscience
- Developmental Psychology
- Pediatric Medicine
Background:
- Behavioral problems are frequent in children with tuberous sclerosis complex (TSC).
- These challenges significantly impact home management and family well-being.
- Parenting stress is a critical factor often associated with these conditions.
Purpose of the Study:
- To assess behavioral problems in pediatric patients with TSC.
- To evaluate the level of parenting stress in parents of children with TSC.
- To identify risk factors for behavioral issues and associated parental stress.
Main Methods:
- Utilized standardized measures to assess behavior in 99 pediatric TSC patients.
- Evaluated parenting stress levels in the parents of these patients.
- Correlated behavioral problems and parenting stress with clinical and demographic factors.
Main Results:
- Approximately 40% of pediatric patients exhibited clinically significant behavioral problems, notably autism spectrum disorder symptoms, inattention, and hyperactivity.
- Higher seizure frequency, mixed seizure disorder, and low intellectual functioning were significant risk factors for behavioral problems.
- Nearly 50% of parents reported significant parenting stress, linked to child's seizures, psychiatric history, low intelligence, and behavioral issues.
Conclusions:
- Behavioral problems are a prominent feature in children with TSC.
- Clinicians must recognize and address these behavioral challenges.
- Integrating behavioral interventions and parental stress monitoring into TSC management is crucial.
Abstract:
Behavioral problems are common in children with tuberous sclerosis complex (TSC) and can be challenging to manage at home. Standardized measures were used to assess behavior in 99 pediatric patients with TSC and to evaluate parenting stress in their parents. About 40% of the pediatric patients presented clinically significant behavioral problems, most frequently involving symptoms of autism spectrum disorder, inattention, and hyperactivity. Higher seizure frequency, mixed seizure disorder, and low intellectual functioning placed the patient at significant risk for behavior problems. Almost 50% of participating parents reported experiencing clinically significant parenting stress, which was associated with specific characteristics of the child, including the presence of current seizures, a history of psychiatric diagnosis, low intelligence, and behavioral problems. Clinicians should be aware that behavioral problems are prominent in children with TSC. Referrals for behavioral intervention and monitoring of parental stress should be included in the medical management of children with TSC.
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