This National Institute for Health and Care Excellence (NICE) guideline covers assessing and managing urinary incontinence in children, young people and adults with neurological disease. It aims to improve care by recommending specific treatments based on what symptoms and neurological conditions people have.
Symptoms of neurogenic lower urinary tract dysfunction may relate to impaired urine storage and/or bladder emptying difficulties. Symptoms of impaired storage include increased frequency of urination and urinary incontinence. Urinary tract symptoms have a significant impact on quality of life, for example, they can cause embarrassment, lead to social isolation and impair activities of daily living. Incontinence is particularly problematic and can arise as a result of an overactive bladder, dysfunction of the urethral sphincters or a combination of the two.
Secondary effects can also arise as a result of neurogenic lower urinary tract dysfunction. For example, there is a marked increase in the risk of urinary tract infection in people with neurogenic lower urinary tract dysfunction and kidney function can be lost as a result of abnormally high pressures within the bladder, from the effects of urinary tract infection and as a result of kidney stones.
An overview of the clinical approach that is used when dealing with neurogenic lower urinary tract dysfunction is provided in three algorithms that are included in the full guideline on NICE's website. The recommendations have also been added to the NICE pathway.
Assessment of lower urinary tract dysfunction in patients with neurological conditions
- When assessing lower urinary tract dysfunction in a person with neurological disease, take a clinical history, including information about:
- urinary tract symptoms
- neurological symptoms and diagnosis (if known)
- clinical course of the neurological disease
- bowel symptoms
- sexual function
- comorbidities
- use of prescription and other medication and therapies.
- If the dipstick test result and person's symptoms suggest an infection, arrange a urine bacterial culture and antibiotic sensitivity test before starting antibiotic treatment. Treatment need not be delayed but may be adapted when results are available.
- Be aware that bacterial colonisation will be present in people using a catheter and so urine dipstick testing and bacterial culture may be unreliable for diagnosing active infection.
- Refer people for urgent investigation if they have any of the following 'red flag' signs and symptoms:
- haematuria
- recurrent urinary tract infections (for example, three or more infections in the last 6 months)
- loin pain
- recurrent catheter blockages (for example, catheters blocking within 6 weeks of being changed)
- hydronephrosis or kidney stones on imaging
- biochemical evidence of renal deterioration.
Information and support
- Offer people with neurogenic urinary tract dysfunction, their family members and carers specific information and training. Ensure that people who are starting to use, or are using, a bladder management system that involves the use of catheters, appliances or pads:
- receive training, support and review from healthcare professionals who are trained to provide support in the relevant bladder management systems and are knowledgeable about the range of products available
- have access to a range of products that meet their needs
- have their products reviewed, at a maximum of 2 yearly intervals.
Treatment to improve bladder storage
- Offer bladder wall injection with botulinum toxin type A[1] to adults:
- with spinal cord disease (for example, spinal cord injury or multiple sclerosis) and
- with symptoms of an overactive bladder and
- in whom antimuscarinic drugs have proved to be ineffective or poorly tolerated.
- Ensure that patients who have been offered continuing treatment with repeated botulinum toxin type A injections have prompt access to repeat injections when symptoms return.
Treatment to prevent urinary tract infection
- Do not routinely use antibiotic prophylaxis for urinary tract infections in people with neurogenic lower urinary tract dysfunction.
Monitoring and surveillance protocols
- Offer lifelong ultrasound surveillance of the kidneys to people who are judged to be at high risk of renal complications (for example, consider surveillance ultrasound scanning at annual or 2 yearly intervals). Those at high risk include people with spinal cord injury or spina bifida and those with adverse features on urodynamic investigations such as impaired bladder compliance, detrusor-sphincter dyssynergia or vesico-ureteric reflux.
Access to and interaction with services
- When managing the transition of a person from paediatric services to adult services for ongoing care of neurogenic lower urinary tract dysfunction:
- formulate a clear structured care pathway at an early stage and involve the person and/or their parents and carers
- involve the young person's parents and carers when preparing transfer documentation with the young person's consent
- provide a full summary of the person's clinical history, investigation results and details of treatments for the person and receiving clinician
- integrate information from the multidisciplinary health team into the transfer documentation
- identify and plan the urological services that will need to be continued after the transition of care
- formally transfer care to a named individual(s).