Clinical priorities to improve the neuropsychological care of individuals with Spina Bifida: A consensus statement of the Spina Bifida Association and the Spina Bifida and Hydrocephalus Neuropsychology Collaborative.

Objective: Spina Bifida (SB) is a medical and neurodevelopmental disability that impacts multiple health and functional systems, including cognitive and neuropsychological functioning. Neuropsychological assessment and monitoring are integral components of SB-related clinical care, as outlined in the Spina Bifida Association's (SBA) Neuropsychological Care Guidelines for People with Spina Bifida. However, practice-based research indicates that access to SB-informed neuropsychological care is limited in the United States. This white paper is intended to address this gap and propose methods to expand the availability of high-quality neuropsychological care and resources for persons with SB and their families. Method: The Spina Bifida and Hydrocephalus Neuropsychology Collaborative, a voluntary assembly of pediatric and lifespan neuropsychologists, organized an expert convening in March 2023 to address these issues. Results: This white paper summarizes the consensus recommendations of the Collaborative, which aim to improve neuropsychological care for individuals with SB and facilitate the implementation of the SBA's 2020 Guidelines. To this end, the Collaborative proposes three levels of clinical care: Universal Care, which involves developing a well-vetted collection of information and resources for SB patients and their families; Core Care, which focuses on establishing coordinated neuropsychological assessment approaches and test batteries; and Optimal Care, which integrates neuropsychological consultation and insights into broader multidisciplinary medical care. These recommendations were reviewed and approved by the SBA's Professional Advisory Committee as an official position paper. Conclusion: The goal of these recommendations is to enhance access to neuropsychological care and improve the lives of individuals with SB.