How should I manage a child with spina bifida who presents with urinary incontinence?

Managing a child with spina bifida who presents with urinary incontinence involves a multidisciplinary approach and careful surveillance due to the high risk of complications NICE CG148.

• Multidisciplinary Team Meetings: Consider establishing regular multidisciplinary team meetings involving paediatric and adult specialists to discuss the management of neurogenic lower urinary tract dysfunction in children and young people, particularly during the transition to adult services NICE CG148.
• High Risk and Surveillance: Children with spina bifida are at high risk of urinary tract complications, including impaired bladder compliance, detrusor-sphincter dyssynergia, or vesico-ureteric reflux NICE CG148. Urodynamic investigations should be considered as part of a surveillance regimen for these high-risk individuals NICE CG148.
• Potential Complications and Information for Families: It is crucial to discuss with the child and their family members or carers the increased risk of renal complications (such as kidney stones, hydronephrosis, and scarring) NICE CG148. They should be informed about symptoms to look out for, such as loin pain, urinary tract infection, and haematuria, and advised when to seek healthcare professional advice NICE CG148. The increased risk of bladder stones should also be discussed, noting symptoms like recurrent infection, recurrent catheter blockages, or haematuria NICE CG148. There may also be an increased risk of bladder cancer in people with a long history of neurogenic lower urinary tract dysfunction and complicating factors like recurrent urinary tract infections NICE CG148.
• General Management Considerations (Specialist-Led): While specific treatments are specialist-led, general approaches may include behavioural management programmes (e.g., timed voiding, bladder retraining) NICE CG148. For stress incontinence, options like pelvic floor muscle training (if voluntary contraction is preserved), autologous fascial sling surgery, or, in specific cases, an artificial urinary sphincter may be considered NICE CG148. Augmentation cystoplasty might be an option for those with non-progressive neurological disorders and complications of impaired bladder storage, requiring lifelong follow-up NICE CG148. Catheter valves can be an alternative to drainage bags, considering the person's preference, support, dexterity, cognitive ability, and lower urinary tract function NICE CG148. Alpha-blockers should not be offered for bladder emptying problems caused by neurological disease NICE CG148.