The Journal of the Arkansas Medical Society Med Journal Feb 2020_Final

EDITORIAL PANEL: Chad T. Rodgers, MD, FAAP | Elena M. Davis, MD, MPH | Shannon Edwards, MD | William L. Mason, MD | J. Gary Wheeler, MD, MPS Spina Bifida: Neuropsychological and Social Implications in Adulthood LAURA HOBART-PORTER, DO, FAAPMR S pina bifida (SB) affects thousands of children each year. Due to advancements in urologic and neurosurgical management, there are now more adults alive than children with this historically “pediatric” condition. This has created challenges for adult patients in accessing care with well- informed providers. The Spina Bifida Association recently published a comprehensive guideline: Care of People with Spina Bifida, spanning birth through adulthood. 1 In last month’s A Closer Look at Quality article, I discussed the management of children with SB. This article focuses on neuropsychological, transitional and adult issues. Individuals with myelomeningocele, a type of SB, tend to have associated Chiari II malformation, hydrocephalus and other congenital brain malformations that can contribute to abnormal neurocognitive functioning. If a shunt is present or has had multiple revisions, it can negatively impact cognitive function. Most patients have some 158 • The Journal of the Arkansas Medical Society impairment of executive function, namely self-regulation, organization and motivation. Many patients meet criteria for Attention Deficit Disorder, Predominantly Inattentive Type, but do not respond as well to stimulant medications as their typical peers. 2 Academically, task-switching, mathematics and visual-spatial reasoning tend to be more challenging. 3 Neuropsychological testing can help guide vocational planning and determine if an individualized education plan and 504 accommodations are needed. Vocabulary and grammar are usually relative strengths, but as individuals reach adolescence, social pragmatics becomes a deficit. Pragmatics relate to the use of language in context and can be learned with practice and help from speech therapists or special education professionals. Neuropsychological deficits can influence relationships, particularly as social conduct becomes more important developmentally. 2 The combination of pragmatics, executive function and attention deficit makes maintaining relationships exceptionally difficult. When we consider the physical impairments and time constraints (therapist and doctor visits, incontinence management breaks), the importance of providing social development opportunities becomes clear. Individuals with SB should have exposure to activities that allow interaction with typical peers and those who can identify with similar struggles. There are adapted sports and activities available to facilitate interaction. Spina Bifida Camp is especially beneficial for children, encouraging autonomy, self- management and peer relationships. These camps are offered in most states including Arkansas and should include medical staff. 1 While children with SB often have access to a team of specialists, this is not generally the case for adults. Adults tend to coordinate their own care and independently manage medications, equipment and medical paperwork. These are complex tasks when we consider the typical patient’s neuropsychological profile and executive function deficits. If cognitive impairment is severe, families should consider guardianship before their child www.ArkMed.org

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