[Formula: see text] The multifaceted role of neuropsychology in pediatric solid organ transplant: preliminary guidelines and strategies for clinical practice.

The incidence of pediatric solid organ transplantation (SOT) has increased in recent decades due to medical and surgical advances as well as improvements in organ procurement. Survival rates for pediatric kidney, liver, and heart transplantation are above 85% but patients continue to experience complex healthcare needs over their lifetime. Long-term developmental and neuropsychological sequelae are becoming increasingly recognized in this population, although preliminary work is limited and deserves further attention. Neuropsychological weaknesses are often present prior to transplantation and may be related to underlying congenital conditions as well as downstream impact of the indicating organ dysfunction on the central nervous system. Neuropsychological difficulties pose risk for functional complications, including disruption to adaptive skill development, social-emotional functioning, quality of life, and transition to adulthood. The impact of cognitive dysfunction on health management activities (e.g., medication adherence, medical decision-making) is also an important consideration given these patients' lifelong medical needs. The primary aim of this paper is to provide preliminary guidelines and clinical strategies for assessment of neuropsychological outcomes across SOT populations for pediatric neuropsychologists and the multidisciplinary medical team, including detailing unique and shared etiologies and risk factors for impairment across organ types, and functional implications. Recommendations for clinical neuropsychological monitoring as well as multidisciplinary collaboration within pediatric SOT teams are also provided.

A Mixed-Methods Analysis of Family Perceptions of Neuropsychological Evaluation and Resources for Pediatric Brain Tumor Survivors.

OBJECTIVE: Neuropsychological testing is often recommended for pediatric brain tumor survivors, yet little is known about perceptions of testing and resources. The purpose of this study is to examine survivor and caregiver perceptions about neuropsychology and resources and identify factors associated with receipt of neuropsychological testing. METHOD: Survivors and their families (N = 55) completed questionnaires on demographics and family functioning. The Neurological Predictive Scale was used to rate treatment intensity and expected impact on neuropsychological functioning. Chi squares and logistic regression were used to examine the associations between demographic, disease, and treatment factors and receipt of neuropsychological testing. Qualitative interviews (N = 25) were completed with a subset of families and coded with thematic content analysis and a multicoder consensus process with high inter-rater reliability (kappas .91-.93). RESULTS: The majority of survivors received neuropsychological testing. Survivors were more likely to receive neuropsychological testing if they were younger and if their caregivers had less than a college education and lower income. Qualitatively, families identified neurocognitive concerns. Some families reported that neuropsychological testing was helpful in clarifying deficits or gaining accommodations, while other families had difficulty recalling results or identified barriers to services. To mitigate the impact of deficits, families implemented metacognitive strategies and advocated for their survivor at school. Families desired more resources around the transition to adulthood and more opportunities for connection with other survivors. CONCLUSIONS: Many families valued insights from neuropsychological services yet identified room for further improvement to address barriers and ensure accessibility and comprehensibility of neuropsychological findings.