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Parent-child discrepancies in reports of child psychosocial functioning in neurofibromatosis type 1
Nour Al Ghriwati1, Paige Little2, Staci Martin2
1Clinical Research Directorate, Frederick National Laboratory for Cancer Research.
Insights
Parents reported more social-emotional difficulties in children with neurofibromatosis type 1 (NF1) than the children themselves. Factors like ADHD and family dynamics influenced these reporting differences.
Area of Science:
- Pediatric Psychology
- Neurodevelopmental Disorders
- Child Psychiatry
Background:
- Children with neurofibromatosis type 1 (NF1) face heightened risks for social-emotional challenges, including anxiety and depression.
- Parental reports are the primary method for assessing child well-being in NF1 research, with limited child self-reporting.
- Discrepancies between parent and child reports in other populations correlate with distress and socioemotional issues.
Purpose of the Study:
- To assess the agreement between parent and child self-reports on behavioral and social-emotional functioning in children with NF1 and plexiform neurofibromas (pNFs).
- To investigate child, family, and community factors associated with reporting discrepancies in this population.
Main Methods:
- Examined concordance of parent proxy- and child self-report using Behavior Assessment System for Children-Second Edition (BASC-2) subscales.
- Analyzed child sex, ADHD diagnosis, and family functioning as predictors of reporting differences.
- Included children diagnosed with NF1 and pNFs.
Main Results:
- Parents reported significantly higher levels of anxiety, depression, and atypicality compared to their children with NF1.
- Child sex, presence of an ADHD diagnosis, and perceived family functioning were significant predictors of discrepancies in reported functioning.
- Youth with NF1 and pNFs showed notable differences between parent and self-perceptions of psychosocial well-being.
Conclusions:
- Multi-informant assessments are essential for a comprehensive understanding of psychosocial functioning in children with NF1.
- Acknowledging discrepancies in reporting highlights the need to consider multiple perspectives for accurate risk assessment and intervention.
- Understanding factors contributing to reporting differences can inform tailored support for children with NF1 and their families.
Abstract:
Children with neurofibromatosis type 1 (NF1) are at an increased risk for social-emotional difficulties. These difficulties, including depression and anxiety, are typically measured through parental report of child functioning in research and rarely have children with NF1 rated their own well-being. Discrepancies between parent proxy- and child self-report of psychosocial functioning in other populations have been shown to relate to socioemotional problems and distress. This study examined the concordance of parent proxy- and child self-report of child behavioral and social-emotional functioning on selected Behavior Assessment System for Children-Second Edition subscales in families of children with NF1 and plexiform neurofibroma tumors (pNFs). We also sought to explore possible child, family, and community factors relating to discrepancies in reporting for youth with NF1 and pNFs. Overall, parents reported higher symptoms across psychosocial domains (anxiety, depression, and atypicality) in comparison to their children. Furthermore, characteristics like child sex, attention-deficit hyperactivity disorder diagnosis, and family functioning significantly predicted differences in ratings of child functioning. These findings indicate that multi-informant studies are crucial to understanding multiple perspectives among family members in symptom-reporting and risk factors for these discrepancies. (PsycInfo Database Record (c) 2025 APA, all rights reserved).
