Parent-child discrepancies in reports of child psychosocial functioning in neurofibromatosis type 1

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).

Trial registration: ClinicalTrials.gov NCT00924196.