From the Guidelines
Spina bifida management should prioritize a multidisciplinary approach, including neurosurgeons, urologists, orthopedists, and physical therapists, to address various complications and improve quality of life, as evidenced by recent studies 1. The goal of this approach is to prevent complications such as urinary incontinence, recurrent urinary tract infections, chronic renal insufficiency, and end-stage renal disease, which are major sources of morbidity in patients with spina bifida 1.
Key Considerations
- Prevention of spina bifida includes taking folic acid supplements before and during early pregnancy, with the recommended dose being 400-800 micrograms daily for most women, and higher doses (4 mg daily) for those with higher risk factors.
- Treatment depends on severity and may include surgery shortly after birth to close the opening, physical therapy, mobility aids, and medications to manage complications like urinary tract infections.
- Long-term management often requires a multidisciplinary approach to address various complications that may affect mobility, bladder and bowel function, and cognitive development.
Current Management Strategies
Current techniques for reconstructive surgery have good outcomes for the primary goals, i.e., protection of renal function, improved urine and fecal continence, and independence, as noted in a study published in 2015 1. However, these surgeries are complex and can be associated with significant morbidity, highlighting the need for careful consideration and individualized treatment plans.
Future Directions
Additional studies are needed to better determine the true quality of life changes that occur following reconstructive surgery and which patients will benefit most from surgery, as well as to explore innovative approaches such as tissue engineering and neuro-modulation techniques, which hold the potential to provide viable alternatives to surgical treatment of patients with spina bifida 1.
From the Research
Definition and Management of Spina Bifida
- Spina bifida, also known as myelomeningocele, is a birth defect where the spinal cord does not develop properly due to incomplete closure of the neural tube at 28 days of gestation 2.
- Management of myelomeningocele includes life-long comprehensive neurologic, urologic, musculoskeletal, skin, and habilitation management 2.
Self-Management and Independence
- Self-management and independence behaviors are associated with improved health conditions common to spina bifida, such as skin integrity and bowel and bladder management 3.
- Partnerships among parents, clinicians, and youths with spina bifida are essential to implementing tailored interventions based on condition-specific assessments of self-management and independence 3.
- A systematic review of the literature found that multiple demographic, environmental, condition, and process factors are related to self-management behaviors in individuals with spina bifida 4.
Lifetime Care Model and Transition Plan
- The development of a lifetime care model in comprehensive spina bifida care has been described, including standardized care protocols and transition plan 5.
- An evidence-based individualized transition plan (ITP) has been developed to optimize the readiness of adolescents with spina bifida for adult healthcare, focusing on increasing independence, autonomy, and personal responsibility for health-related tasks 6.
- The ITP is a set of clearly articulated, mutually developed goals that arise from best available data on successful transition and are individualized to meet the individual challenges, needs, and attributes of each patient and family 6.