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Neurofibromatosis type 1 (NF1) is a genetic syndrome affecting about 1 in 3500 individuals; many of those affected have plexiform neurofibroma (pNF) tumors and associated symptoms and complications. Furthermore, learning and attention problems, as well as deficits in adaptive functioning, are common, often beginning in early childhood. This study aimed to describe adaptive functioning and to examine relationships between adaptive functioning and cognitive and academic variables and level of independence among adolescents and young adults (AYA) with NF1 and pNF tumors. Fifty-five AYA aged 16-31 years participated in a series of neuropsychological evaluations while parents completed the Vineland Adaptive Behavior Scales (VABS-II) as part of a larger natural history study. Over one-third (35%) of AYA were neither in school nor employed. Mean VABS-II daily living and socialization scores were low average while mean Verbal and Performance IQ scores were average. VABS-II scores were positively correlated with processing speed, executive functioning, and working memory scores. Verbal IQ was the only significant predictor of work/school status. Identification of the correlates and predictors of adaptive functioning and life achievement can help guide healthcare providers with the early identification of risk factors and possible areas for intervention.

Although many valid pain-related assessment instruments and interventions exist, little is known about which are actually utilized in practice and the factors that contribute to pediatric psychologist’s decisions about their use. The aim of this survey study was to present a summary of current clinical practice among pediatric psychologists in the area of pediatric pain and to identify the needs and possible resources that would enable practitioners to better implement evidence-based assessments and interventions. To accomplish this aim, the Pain Special Interest Group of the Society of Pediatric Psychology (SPP) constructed an online survey that was sent electronically to current members of the SPP list serve. Results indicated the majority of participants are guided by a theoretical model and are using evidence-based assessments and interventions, although they are not always familiar with the literature supporting their use. Providers noted evidence-based pain intervention is facilitated by assessment tools, intervention resources, and appreciation of pain interventions by multidisciplinary team members. Barriers are both logistical (clinic space and time constraints) and knowledge-based (lack of familiarity with assessments/interventions). Thus, while pediatric psychologists are progressing towards better translation of research to practice, continued educational efforts and communication among practitioners about available resources are warranted.