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Social and emotional problems in children with neurofibromatosis type 1: evidence and proposed interventions
N S Johnson1, H M Saal, A M Lovell
1Division of Human Genetics, Children's Hospital Medical Center, Cincinnati, Ohio, USA.
Insights
Children with neurofibromatosis type 1 (NF1) experience more social and emotional difficulties than their peers. Early screening and interventions are recommended to address these challenges in NF1 patients.
Area of Science:
- Pediatric Neurology
- Genetics
- Child Psychology
Background:
- Neurofibromatosis type 1 (NF1) is a genetic disorder with variable expressivity.
- Social and emotional problems are common concerns in children with NF1.
Purpose of the Study:
- To identify social and emotional problems in children and adolescents with NF1.
- To compare these problems with unaffected siblings and the general population.
- To propose targeted interventions for affected children.
Main Methods:
- Assessed 43 children with NF1 and 22 unaffected siblings (ages 5-18).
- Utilized the Child Behavior Checklist (CBCL) completed by parents and teachers.
- Compared results against test norms and sibling data.
Main Results:
- Parents rated children with NF1 as having significantly more social and attention problems.
- Children with NF1 showed higher rates of anxiety/depression, withdrawal, thought problems, somatic complaints, and aggressive behavior.
- Children with NF1 also participated less in sports and activities compared to siblings.
Conclusions:
- NF1 is associated with a wide range of social and emotional challenges.
- Early screening and intervention for speech, motor, and cognitive issues are crucial.
- Systematic screening and psychological support are recommended for children with NF1.
Objective:
To describe social and emotional problems in children and adolescents with neurofibromatosis type 1 (NF1) and propose interventions. Our hypothesis is that children with NF1 will have significantly more social and emotional problems, compared with their unaffected siblings and children in the general population.
Study Design:
Forty-three children with NF1 and 22 unaffected siblings (ages 5 to 18 years) were assessed with a standardized test completed by parents and teachers (the Child Behavior Checklist).
Results:
As with other aspects of NF1, there was variable expressivity. However, when rated by parents, children with NF1 had significantly more problems in comparison with test norms or unaffected siblings on 7 of 8 scales: Social Problems, Attention Problems, Anxiety/Depression, Withdrawal, Thought Problems, Somatic Complaints, and Aggressive Behavior. Children with NF1 also scored lower than unaffected siblings on measures assessing sports and other activities. Teachers reported fewer differences.
Conclusions:
We propose interventions in the form of information for parents; early screening and treatment for speech, motor, and cognitive problems; and an increased level of intervention to prevent and treat psychologic problems, including systematic screening with standardized tests.