Evaluating Access to Neuropsychological Services for Individuals with Spina Bifida: Insights from the 2022 Provider Survey.

Background: Many people with spina bifida (SB) have congenital brain malformations and receive neurosurgical intervention that can impact cognitive, behavioral, and emotional functioning. The Spina Bifida Association's (SBA) guidelines for care recommend that people with SB have neuropsychology evaluations to assess cognitive, behavioral, and emotional functioning throughout their lifespan; however, people with SB anecdotally report having trouble finding and accessing such care.

Objectives: The goal of this study was to gain information about neuropsychology services available to people with SB and identify possible barriers to care.

Methods: Neuropsychologists in the United States were invited to complete a practice-focused survey created by members of the Spina Bifida Neuropsychology Collaborative (SBNC). The survey was emailed to professional neuropsychology listservs and directly to providers at the SBA Clinic Care Partner and National Spina Bifida Patient Registry (NSBPR) sites.

Results: Responses from 34 neuropsychologists (representing 22 sites, including 40% of SBA Clinic Care Partner sites and 67% of NSBPR sites) indicated that multilingual SB-focused neuropsychology services are available within all regions of the United States. Comprehensive, outpatient evaluations are common; however, integration of neuropsychology services into inpatient settings and multidisciplinary clinics is limited. Respondents report that waitlist time is the most frequent barrier to neuropsychology care, followed by cost/insurance/payor type, travel/transportation difficulties, and limited referrals.

Conclusion: There are considerable gaps in the currently available array of US-based neuropsychology services for individuals with SB. Neuropsychologists and SB clinical programs are encouraged to strategically increase availability of neuropsychological services and expand care options.