Neurogenic bowel dysfunction (NBD) is a significant quality of life issue for individuals with spina bifida (SB). NBD in these individuals is typically characterized as significant constipation and/or fecal incontinence due to the absence of normal lumbosacral nerve function and subsequent loss of sensory and motor control, altered intestinal motility, and abnormal sphincteric control.¹ NBD is experienced by over 80% of individuals with SB, with most reporting fecal incontinence episodes that occur at least once per month.^2,3 Over 50% of parents of children with SB rated fecal incontinence from NBD as their biggest concern. At the same time, adults with SB and care partners (eg, family members, caregivers, or life partners) of adults with SB considered it as one of their top three areas of concern.⁴

Studies have shown that NBD in childhood is associated with decreased quality of life, decreased school attendance, and increased rates of anxiety and bullying.⁵ In adults, NBD is associated with lower educational attainment and lower rates of employment.^6,7 Poor bowel management can interfere with social independence, personal relationships, and intimacy, further exacerbating depressive symptoms that can be so severe that the patient becomes noncompliant and worsens their bowel dysfunction.⁸ Secondary concerns from NBD include urinary tract infections, reversible ventriculoperitoneal shunt malfunction, skin breakdown, hemorrhoids, and anal fissures.^9-15

The adverse effects of NBD extend beyond the affected individuals. Care partners are often involved with NBD management well beyond childhood, as less than a quarter of individuals with NBD can perform their bowel programs independently.¹⁶ As a result, care partners also report significant emotional burdens and reduced quality of life due to NBD management’s time, effort, and unpleasantness.^17-21

Because NBD is a top concern among individuals with SB and their care partners, NBD has become an area of clinical and research interest for those involved with the care of individuals with SB. The Spina Bifida Association (SBA), the only national organization devoted to advocacy for individuals with SB, recently utilized a community-engaged process to generate its first research agenda. This process included surveys and focus groups of various stakeholders and the formal creation of a Research Advisory Council.²² NBD is one of six initial research focus areas. Urology providers need to remain engaged in NBD management and research since they are the primary specialty currently caring for this population.²³ SB is a congenital disorder primarily managed by pediatric providers. With the advent of medical advances such as intermittent catheterization and shunts to treat hydrocephalus, the majority of individuals currently living with SB are adults. This rise in life expectancy and patient numbers means that adult urology providers are now seeing individuals in their practice with NBD and neurogenic bladder secondary to SB and will need to address the patient’s concerns adequately.

The SBA has recently released and begun training providers with their Lifespan Bowel Management Protocol, which is intended to assist in the management of NBD for medical providers who encounter patients with NBD (https://www.spinabifidaassociation.org/lifespan-bowel-management-protocol/).²⁴ The protocol provides recommendations and guidance based on available evidence and considers age-related concerns, invasiveness and complexity of therapy, and the patient’s ability to be independent. The goals of a successful bowel management program consist of social continence, complete bowel evacuations within a reasonable amount of time, predictable and consistent bowel movements, and physical autonomy. Multiple treatment modalities can work synergistically to provide optimal results ranging from conservative management, such as oral medications, to more invasive options like trans-anal irrigations and antegrade continence enemas (see Figure).

NBD in this population is complex and challenging. Proper management is essential for medical, social, and emotional reasons. Each individual with SB is unique. By incorporating the Lifespan Bowel Management Protocol and optimizing bowel health, these individuals may increase their quality of life and reduce secondary medical concerns.