Spina bifida (SB) is the most common permanently disabling, non-chromosomal birth defect.1 SB leads to a variety of physical disabilities affecting the neurologic, orthopedic, gastrointestinal, and genitourinary systems. Many require ventriculoperitoneal shunts (VPS) to treat their hydrocephalus. Mobility, which is largely dependent on the spinal level of the SB defect, varies from no restrictions to non-ambulation. The resultant neurogenic bowel and bladder dysfunction is addressed with both medical and surgical treatments to achieve continence and preserve intestinal, bladder and renal health. These chronic conditions can be well-managed and over 75% of children with SB reach adulthood.2,3

With this growing population of adults with SB, increasing emphasis has been placed on their psychosocial development, healthy interpersonal relationships, and good sexual health.4, 5, 6, 7 Part of this includes identifying unhealthy interpersonal interactions including sexual abuse (SA) and intimate partner violence (IPV). Both adults and children with disabilities are at higher risk of abuse. Children with disabilities are specifically vulnerable due to their physical limitations, desire to please and be compliant with adults/caregivers, and their dependency on others for physical care.8,9 This last factor is particularly true of those with SB who require close physical contact with caregivers for the management of their neurogenic bladder via intermittent catheterization or incontinent stomal care. This is concerning especially in the context that one-third of abusers are known to disabled victims with 44% of abused children in care-providing relationships with their abusers.9,10

While 62% of disabled individuals have had a history of childhood abuse, abuse is not limited to childhood; nearly a quarter of young adults with a disability report experiencing some form of abuse within the past year.11 Females with disabilities are at a particularly high risk with an 83% lifetime risk of SA. Males with disabilities have 3 times higher lifetime risk of SA than males without disabilities.12 Similarly, sexual orientation plays a role; disabled non-heterosexuals report higher rates of SA compared to their non-disabled counterparts.13 Based on these findings, we sought to evaluate the prevalence of SA and IPV and associated risk factors specifically in the SB population.

SB healthcare providers, healthcare organizations and patient advocacy groups, including the American Academy of Pediatrics (AAP) and the Spina Bifida Association (SBA), recognize the importance in addressing abuse especially in sexual health education.14,15 However, impactful sexual health education for young adults and adults with SB depends on quality data. There are little data on the prevalence of SA or IPV specifically in the SB population.16,17 These studies are limited to small young adult cohorts within specific geographic locations. With a more expansive evaluation, providers can more accurately gauge the extent of these issues within the SB population. A better assessment of SA and IPV would aid providers in counseling people with SB and their caregivers on the risks, advocating for improved preventative and therapeutic interventions, and assessing the impact of such interventions.

This study sought to address this knowledge gap by identifying the prevalence of SA and IPV in the SB population. We aimed to evaluate the prevalence and risk factors of SA and IPV in adults with SB. We hypothesized that (1) a non-negligible proportion of adults with SB have experienced both SA and IPV, and (2) females, non-heterosexuals, and those managing their neurogenic bladder with either catheterization or with an incontinent stoma would be at higher risk.