Demographic and Disease-Related Predictors of Socioemotional Development in Children with Neurofibromatosis Type 1 and Plexiform Neurofibromas: An Exploratory Study

SIMPLE SUMMARY: Individuals with neurofibromatosis type 1 (NF1) are vulnerable to socioemotional difficulties. However, we know little about how socioemotional functioning changes across childhood and adolescence and what factors predict the change. The current longitudinal study aims to address this gap by examining how demographic and NF1-disease related factors predict development of socioemotional functioning in a sample of children and adolescents with NF1 and PNs. We found substantial within-group variabilities in socioemotional development with developmental patterns varying across socioemotional domains, reporters of socioemotional functioning, age at baseline, parental education, race/ethnicity, number of NF1-related complications, and visibility of tumors. These findings indicate the need for individualized patient care and interventions that consider each child’s unique background and needs. The results also suggest the need for more longitudinal research to further understand how various factors affect socioemotional development in children with NF1 to better inform intervention development and practices. ABSTRACT: Individuals with neurofibromatosis type 1 (NF1) and plexiform neurofibromas (PNs) have a higher risk for socioemotional problems. The current study aims to identify the socioemotional developmental pattern and its predictors across childhood and adolescence in individuals with NF1 and PNs. Participants included 88 children with NF1 and PNs (aged 6–18 years old, M = 12.05, SD = 3.62, 57% male) in a natural history study. Neuropsychological assessments were administered three times over six years. There are large variabilities in socioemotional development in the study participants. Developmental patterns varied across socioemotional domains, respondent type (parent-report [PR] vs. child-report [CR]), demographic factors, and NF1 disease-related factors. For instance, lower parental education was associated with a greater decline in internalizing problems (PR) but a greater increase in school disconnectedness (CR) over time. Non-White (vs. White) children were more likely to experience increased adaptive skills (PR) but decreased personal adjustment (CR). Children with more visible tumors experienced a greater decrease in school disconnectedness (CR). Children with more NF1 complications experienced a greater decrease in externalizing problems (PR). These findings indicate the necessity of using multi-informants and investigating subdomains of socioemotional functions. They also highlight the importance of developing individualized approaches to patient care and interventions.