What is the recommended management for individuals with spina bifida?

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From the Guidelines

Management of individuals with spina bifida requires a comprehensive, multidisciplinary approach tailored to each person's specific needs, with a focus on preventing renal deterioration and promoting continence and independent living. The care team should include neurosurgeons, urologists, orthopedic surgeons, physical therapists, and rehabilitation specialists who coordinate care from birth through adulthood 1. For individuals with spina bifida, surgical intervention is indicated for those at risk for renal deterioration and/or is considered for children who fail to achieve satisfactory continence with medical management 1. Some key aspects of management include:

  • Clean intermittent catheterization and anticholinergics for neurogenic bladder
  • Creation of catheterizable channels to facilitate continence measures and promote independent living
  • Enterocystoplasty for bladder augmentation in those with a hostile bladder, although this approach has its own set of complications, including increased risk of infections, metabolic abnormalities, neoplastic transformation, and risk of life-threatening perforation 1
  • Regular monitoring for complications such as tethered cord syndrome, scoliosis, pressure sores, urinary tract infections, and latex allergies
  • Physical, occupational, and speech therapy to maximize independence and function
  • Psychological support to address the emotional and social challenges associated with this complex condition. Recent advances in prenatal surgery have demonstrated that prenatal closure of spina bifida is possible, but the impact of prenatal intervention on future bladder function remains unclear until the urological results of the National Institutes of Health sponsored Management of Myelomeningocele Study are published 1.

From the FDA Drug Label

The safety and efficacy of oxybutynin chloride administration have been demonstrated for pediatric patients 5 years of age and older (see DOSAGE AND ADMINISTRATION). The safety and efficacy of oxybutynin chloride tablets were studied in 30 children in a 24­ week, open-label trial Patients were aged 5-15 years, all had symptoms of detrusor overactivity in association with a neurological condition (e.g., spina bifida), all used clean intermittent catheterization, and all were current users of oxybutynin chloride.

Study results demonstrated that the administration of oxybutynin chloride was associated with improvement in clinical and urodynamic parameters At total daily doses ranging from 5 mg to 15 mg, treatment with oxybutynin chloride tablets was associated with an increase from baseline in mean urine volume per catheterization from 122 mL to 145 mL, an increase from baseline in mean urine volume after morning awakening from 148 mL to 168 mL, and an increase from baseline in the mean percentage of catheterizations without a leaking episode from 43% to 61%.

The recommended management for individuals with spina bifida includes the use of oxybutynin chloride to treat symptoms of detrusor overactivity. The dosage of oxybutynin chloride for pediatric patients with spina bifida is between 5 mg to 15 mg per day, divided into 2-3 doses. This treatment has been shown to improve clinical and urodynamic parameters, such as increasing mean urine volume per catheterization and reducing the frequency of leaking episodes 2.

From the Research

Recommended Management for Individuals with Spina Bifida

The management of individuals with spina bifida requires a multidisciplinary approach, involving various healthcare professionals, including neurosurgeons, orthopedic surgeons, urologists, physical medicine and rehabilitation specialists, pediatricians, psychologists, physical/occupational/speech therapists, social workers, and nurse coordinators 3.

Key Components of Care

  • Multidisciplinary care to address the effects of the disease on the neurological, musculoskeletal, genitourinary, and gastrointestinal systems, as well as the complex psychosocial impact on the developing child 3
  • Surgical closure of the lesion, with subsequent management of associated defects, including the Chiari II brain malformation, hydrocephalus, and urological and orthopaedic sequelae 4
  • Health promotion and preventive health care services, including accommodations for physical and cognitive impairments, monitoring of secondary or chronic conditions, and prevention of acute care utilization 5
  • Orthopedic or musculoskeletal care to address common problems, such as spinal deformity, and to improve function and mobility 6

Guidelines for Care

  • The Spina Bifida Association's Guidelines for the Care of People with Spina Bifida provide the best, most up-to-date recommendations for care across the lifespan, from newborn to adult 7
  • The guidelines highlight the importance of adapting general healthcare screening and counseling recommendations to the unique needs of individuals with spina bifida 5
  • Orthopedic treatment guidelines are available for specific age ranges, with general considerations and evaluation and treatment guidelines provided 6

References

Guideline

Guideline Directed Topic Overview

Dr.Oracle Medical Advisory Board & Editors, 2025

Research

Multidisciplinary spina bifida clinic: the Chicago experience.

Child's nervous system : ChNS : official journal of the International Society for Pediatric Neurosurgery, 2022

Research

Spina bifida.

Nature reviews. Disease primers, 2015

Research

Orthopedic guidelines for the care of people with spina bifida.

Journal of pediatric rehabilitation medicine, 2020

Professional Medical Disclaimer

This information is intended for healthcare professionals. Any medical decision-making should rely on clinical judgment and independently verified information. The content provided herein does not replace professional discretion and should be considered supplementary to established clinical guidelines. Healthcare providers should verify all information against primary literature and current practice standards before application in patient care. Dr.Oracle assumes no liability for clinical decisions based on this content.

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