People have the right to be involved in discussions and make informed decisions about their care, as described in NICE's information on making decisions about your care.
Making decisions using NICE guidelines explains how we use words to show the strength (or certainty) of our recommendations, and has information about prescribing medicines (including off-label use), professional guidelines, standards and laws (including on consent and mental capacity), and safeguarding.
Assessment applies to new people, those with changing symptoms and those needing periodic reassessment of their urinary tract management. The interval between routine assessments will be guided by the person's particular circumstances (for example, their age, diagnosis and type of management) but should not exceed 3 years.
These recommendations on assessment apply to people who have a neurological condition. If the assessment shows the incontinence to be non-neurogenic, see the NICE guidelines on lower urinary tract symptoms in men and urinary incontinence and pelvic organ prolapse in women for guidance on management.
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.
Assess the impact of the underlying neurological disease on factors that will affect how lower urinary tract dysfunction can be managed, such as:
mobility
hand function
cognitive function
social support
lifestyle.
Undertake a general physical examination that includes:
measuring blood pressure
an abdominal examination
an external genitalia examination
a vaginal or rectal examination if clinically indicated (for example, to look for evidence of pelvic floor prolapse, faecal loading or alterations in anal tone).
Carry out a focused neurological examination, which may need to include assessment of:
cognitive function
ambulation and mobility
hand function
lumbar and sacral spinal segment function.
Undertake a urine dipstick test using an appropriately collected sample to test for the presence of blood, glucose, protein, leukocytes and nitrites. Appropriate urine samples include clean-catch midstream samples, samples taken from a freshly inserted intermittent sterile catheter and samples taken from a catheter port. Do not take samples from leg bags.
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.
Ask people and their family members and carers to complete a 'fluid input/urine output chart' to record fluid intake, frequency of urination and volume of urine passed for a minimum of 3 days.
Consider measuring the urinary flow rate in people who are able to void voluntarily.
Measure the post-void residual urine volume by ultrasound, preferably using a portable scanner, and consider taking further measurements on different occasions to establish how bladder emptying varies at different times and in different circumstances.
Consider making a referral for a renal ultrasound scan in people who are at high risk of renal complications such as those with spina bifida or spinal cord injury.
Refer people for urgent investigation if they have any of the following 'red flag' signs and symptoms:
haematuria
recurrent urinary tract infections (for example, 3 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.
Be aware that unexplained changes in neurological symptoms (for example, confusion or worsening spasticity) can be caused by urinary tract disease, and consider further urinary tract investigation and treatment if this is suspected.
Refer people with changes in urinary function that may be due to new or progressing neurological disease needing specialist investigation (for example, syringomyelia, hydrocephalus, multiple system atrophy or cauda equina syndrome).
Assess the impact of lower urinary tract symptoms on the person's family members and carers and consider ways of reducing any adverse impact. If it is suspected that severe stress is leading to abuse, follow local safeguarding procedures.
Do not offer urodynamic investigations (such as filling cystometry and pressure-flow studies) routinely to people who are known to have a low risk of renal complications (for example, most people with multiple sclerosis).
Offer video-urodynamic investigations to people who are known to have a high risk of renal complications (for example, people with spina bifida, spinal cord injury or anorectal abnormalities).
Offer urodynamic investigations before performing surgical treatments for neurogenic lower urinary tract dysfunction.
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.
Tailor information and training to the person's physical condition and cognitive function to promote their active participation in care and self-management.
Inform people how to access further support and information from a healthcare professional about their urinary tract management.
NICE has produced guidance on the components of good patient experience in adult NHS services. All healthcare professionals should follow the recommendations in the NICE guideline on patient experience in adult NHS services. Recommendations on shared decision making and information enabling people to actively participate in their care can be found in the NICE guidelines on shared decision making and patient experience in adult NHS services.
Consider a behavioural management programme (for example, timed voiding, bladder retraining or habit retraining) for people with neurogenic lower urinary tract dysfunction:
only after assessment by a healthcare professional trained in the assessment of people with neurogenic lower urinary tract dysfunction and
in conjunction with education about lower urinary tract function for the person and/or their family members and carers.
When choosing a behavioural management programme, take into account that prompted voiding and habit retraining are particularly suitable for people with cognitive impairment.
In August 2012, not all antimuscarinics had a UK marketing authorisation for the indications in recommendations 1.3.3 to 1.3.5 or for use in both adults and children. See NICE's information on prescribing medicines.
Offer antimuscarinic drugs to people with:
spinal cord disease (for example, spinal cord injury or multiple sclerosis) and
symptoms of an overactive bladder such as increased frequency, urgency and incontinence.
Consider antimuscarinic drug treatment in people with:
conditions affecting the brain (for example, cerebral palsy, head injury or stroke) and
symptoms of an overactive bladder.
Consider antimuscarinic drug treatment in people with urodynamic investigations showing impaired bladder storage.
Monitor residual urine volume in people who are not using intermittent or indwelling catheterisation after starting antimuscarinic treatment.
When prescribing antimuscarinics, take into account that:
antimuscarinics known to cross the blood-brain barrier (for example, oxybutynin) have the potential to cause central nervous system-related side effects (such as confusion)
antimuscarinic treatment can reduce bladder emptying, which may increase the risk of urinary tract infections
antimuscarinic treatment may precipitate or exacerbate constipation.
In August 2012, botulinum toxin type A did not have a UK marketing authorisation for the indications in recommendations 1.3.8 to 1.3.11. See NICE's information on prescribing medicines.
Offer bladder wall injection with botulinum toxin type A 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.
Consider bladder wall injection with botulinum toxin type A for children and young people:
with spinal cord disease and
with symptoms of an overactive bladder and
in whom antimuscarinic drugs have proved to be ineffective or poorly tolerated.
Offer bladder wall injection with botulinum toxin type A to adults:
with spinal cord disease and
with urodynamic investigations showing impaired bladder storage and
in whom antimuscarinic drugs have proved to be ineffective or poorly tolerated.
Consider bladder wall injection with botulinum toxin type A for children and young people:
with spinal cord disease and
with urodynamic investigations showing impaired bladder storage and
in whom antimuscarinic drugs have proved to be ineffective or poorly tolerated.
Before offering bladder wall injection with botulinum toxin type A:
explain to the person and/or their family members and carers that a catheterisation regimen is needed in most people with neurogenic lower urinary tract dysfunction after treatment, and
ensure that they are able and willing to manage such a regimen should urinary retention develop after the treatment.
Monitor residual urine volume in people who are not using a catheterisation regimen during treatment with botulinum toxin type A.
Monitor the upper urinary tract in people who are judged to be at risk of renal complications (for example, those with high intravesical pressures on filling cystometry) during treatment with botulinum toxin type A.
Ensure that people who have been offered continuing treatment with repeated botulinum toxin type A injections have prompt access to repeat injections when symptoms return.
Consider augmentation cystoplasty using an intestinal segment for people:
with non-progressive neurological disorders and
complications of impaired bladder storage (for example, hydronephrosis or incontinence) and
only after a thorough clinical and urodynamic assessment and discussion with the patient and/or their family members and carers about complications, risks and alternative treatments.
Offer patients life-long follow-up after augmentation cystoplasty because of the risk of long-term complications. Potential complications include metabolic effects, such as the development of vitamin B12 deficiency and the development of bladder cancer.
Consider pelvic floor muscle training for people with:
lower urinary tract dysfunction due to multiple sclerosis or stroke or
other neurological conditions where the potential to voluntarily contract the pelvic floor is preserved.
Select patients for this training after specialist pelvic floor assessment and consider combining treatment with biofeedback and/or electrical stimulation of the pelvic floor.
Consider autologous fascial sling surgery for people with neurogenic stress incontinence.
Do not routinely use synthetic tapes and slings in people with neurogenic stress incontinence because of the risk of urethral erosion.
Consider surgery to insert an artificial urinary sphincter for people with neurogenic stress incontinence only if an alternative procedure, such as insertion of an autologous fascial sling, is less likely to control incontinence.
When considering inserting an artificial urinary sphincter:
discuss with the person and/or their family members and carers the risks associated with the device, the possible need for repeat operations and alternative procedures
ensure that the bladder has adequate low-pressure storage capacity.
Monitor the upper urinary tract after artificial urinary sphincter surgery (for example, using annual ultrasound scans), as bladder storage function can deteriorate in some people after treatment of their neurogenic stress incontinence.
Do not offer alpha-blockers to people as a treatment for bladder emptying problems caused by neurological disease.
In people for whom it is appropriate a catheter valve may be used as an alternative to a drainage bag.
[This recommendation is from the NICE guideline on healthcare-associated infections: prevention and control in primary and community care]
To ensure that a catheter valve is appropriate, take into consideration the person's preference, family member and carer support, manual dexterity, cognitive ability, and lower urinary tract function when offering a catheter valve as an alternative to continuous drainage into a bag.
Consider the need for continuing upper urinary tract surveillance in people who have impaired bladder storage (for example, due to reduced bladder compliance).
For people with neurogenic lower urinary tract dysfunction who have intractable, major problems with urinary tract management, such as incontinence or renal deterioration:
consider ileal conduit diversion (urostomy) and
discuss with the person the option of simultaneous cystectomy as prophylaxis against pyocystis.
Do not routinely use antibiotic prophylaxis for urinary tract infections in people with neurogenic lower urinary tract dysfunction.
Consider antibiotic prophylaxis for people who have a recent history of frequent or severe urinary tract infections.
Before prescribing antibiotic prophylaxis for urinary tract infection:
investigate the urinary tract for an underlying treatable cause (such as urinary tract stones or incomplete bladder emptying)
take into account and discuss with the person the risks and benefits of prophylaxis
refer to local protocols approved by a microbiologist or discuss suitable regimens with a microbiologist.
Ensure that the need for ongoing prophylaxis in all people who are receiving antibiotic prophylaxis is regularly reviewed.
When changing catheters in patients with a long-term indwelling urinary catheter:
do not offer antibiotic prophylaxis routinely
consider antibiotic prophylaxis for patients who:
have a history of symptomatic urinary tract infection after catheter change or
experience trauma during catheterisation (trauma defined as frank haematuria after catheterisation or 2 or more attempts of catheterisation).
In August 2012, no antibiotics had a UK marketing authorisation for this indication. See NICE's information on prescribing medicines.
[This recommendation is from the NICE guideline on healthcare-associated infections: prevention and control in primary and community care.]
Do not rely on serum creatinine and estimated glomerular filtration rate in isolation for monitoring renal function in people with neurogenic lower urinary tract dysfunction. For more information on the measurement of kidney function, see the NICE guideline on chronic kidney disease.
Consider using isotopic glomerular filtration rate when an accurate measurement of glomerular filtration rate is required (for example, if imaging of the kidneys suggests that renal function might be compromised). For more information on the measurement of kidney function, see the NICE guideline on chronic kidney disease.
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.
Do not use plain abdominal radiography for routine surveillance in people with neurogenic lower urinary tract dysfunction.
Consider urodynamic investigations as part of a surveillance regimen for people at high risk of urinary tract complications (for example, people with spina bifida, spinal cord injury or anorectal abnormalities).
Do not use cystoscopy for routine surveillance in people with neurogenic lower urinary tract dysfunction.
Do not use renal scintigraphy for routine surveillance in people with neurogenic lower urinary tract dysfunction.
Discuss with the person, and their family members and carers, the increased risk of renal complications (such as kidney stones, hydronephrosis and scarring) in people with neurogenic urinary tract dysfunction (in particular those with spina bifida or spinal cord injury). Tell them the symptoms to look out for (such as loin pain, urinary tract infection and haematuria) and when to see a healthcare professional.
When discussing treatment options, tell the person that indwelling urethral catheters may be associated with higher risks of renal complications (such as kidney stones and scarring) than other forms of bladder management (such as intermittent self-catheterisation).
Use renal imaging to investigate symptoms that suggest upper urinary tract disease.
Discuss with the person, and their family members and carers, the increased risk of bladder stones in people with neurogenic lower urinary tract dysfunction. Tell them the symptoms to look out for that mean they should see a healthcare professional (for example, recurrent infection, recurrent catheter blockages or haematuria).
Discuss with the person, and their family members and carers, that indwelling catheters (urethral and suprapubic) are associated with a higher incidence of bladder stones compared with other forms of bladder management. Tell them the symptoms to look out for that mean they should see a healthcare professional (for example, recurrent infection, recurrent catheter blockages or haematuria).
Refer people with symptoms that suggest the presence of bladder stones (for example, recurrent catheter blockages, recurrent urinary tract infection or haematuria) for cystoscopy.
Discuss with the person, and their family members and carers, that there may be an increased risk of bladder cancer in people with neurogenic lower urinary tract dysfunction, in particular those with a long history of neurogenic lower urinary tract dysfunction and complicating factors, such as recurrent urinary tract infections. Tell them the symptoms to look out for (especially haematuria) that mean they should see a healthcare professional.
Refer for investigation with urinary tract imaging and cystoscopy using a suspected cancer pathway referral, people with:
visible haematuria or
increased frequency of urinary tract infections or
other unexplained lower urinary tract symptoms.
Provide contact details for the provision of specialist advice if a person has received care for neurogenic lower urinary tract dysfunction in a specialised setting (for example, in a spinal injury unit or a paediatric urology unit). The contact details should be given to the person, and their family members and carers, and to the non-specialist medical and nursing staff involved in their care.
Provide people with neurogenic lower urinary tract dysfunction, and their family members and carers, with written information that includes:
a list of key healthcare professionals involved in their care, a description of their role and their contact details
copies of all clinical correspondence
a list of prescribed medications and equipment.
This information should also be sent to the person's GP.
NICE has produced guidance on the components of good patient experience in adult NHS services. All healthcare professionals should follow the recommendations in the NICE guideline on patient experience in adult NHS services, particularly relating to:
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 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).
When receiving a person from paediatric services to adult services for ongoing care of neurogenic lower urinary tract dysfunction:
review the transfer documentation and liaise with the other adult services involved in ongoing care (for example, adult neuro-rehabilitation services)
provide the person with details of the service to which care is being transferred, including contact details of key personnel, such as the urologist and specialist nurses
ensure that urological services are being provided after transition to adult services.
Consider establishing regular multidisciplinary team meetings for paediatric and adult specialists to discuss the management of neurogenic lower urinary tract dysfunction in children and young people during the years leading up to transition and after entering adult services.
Drugs that inhibit the response to sympathetic impulses by blocking the alpha receptor sites of effector organs. Because they inhibit the contraction of non-vascular smooth muscle such as that found at the bladder neck and within the prostate, alpha-blockers are commonly used to treat bladder outflow obstruction in men with normally innervated urinary tracts. Also known as 'alpha adrenergic blocking agents' or 'alpha adrenergic antagonists'.
An anticholinergic agent that specifically blocks the muscarinic form of the cholinergic receptor. Because they decrease the responsiveness of the bladder wall muscle to stimulating nerve impulses, antimuscarinic drugs are used in the management of the overactive bladder.
Surgical reconstruction of the bladder using an isolated intestinal segment to augment bladder capacity.
A procedure to treat stress urinary incontinence, in which a harvested strip of rectus fascia is used to provide support to the urethra. Also see urethral tape and sling surgery.
Behavioural therapies are usually used to treat urge urinary incontinence and mixed urinary incontinence. Such therapies include:
Timed voiding where the person is asked to void at set time intervals, rather than in response to a sense of bladder filling.
Bladder retraining where intervals between voids are progressively increased, or the patient is asked to delay voiding for a specific time when they experience the need to void.
Habit retraining involves identifying an incontinent person's toileting pattern and developing an individualised toileting schedule in order to pre-empt episodes of incontinence.
The process of becoming aware of various physiological functions using instruments that provide information on the activity of those same systems, with a goal of being able to manipulate them at will.
Stone found in the urinary bladder formed by crystallisation and concretion of salts from the urine and containing phosphate and oxalate salts of calcium or ammonium. Stones typically form in conjunction with bacterial colonisation of the urine, for example, when an indwelling catheter is present, or bladder emptying is incomplete.
A serious condition caused by compression of the nerve roots in the lower portion of the spinal canal that supply the lower limbs and the bladder and urethral sphincter.
Surgical removal of all or part of the urinary bladder.
Part of urodynamic testing in which the bladder is slowly filled with liquid while pressure and volume measurements are taken in order to assess bladder function.
Distension and dilation of the renal pelvis and calyces, usually caused by obstruction of the free flow of urine from the kidney. Untreated, it leads to progressive atrophy of the kidney as a result of back pressure.
Surgical technique for the diversion of urine after a patient has had their bladder removed. Urine is transported from the ureters (the tubes draining urine from the kidneys) to a stoma on the abdominal wall using an isolated segment of small intestine.
Originating in the nerves or nervous tissue.
Procedure used to strengthen healthy muscles or to maintain muscle mass during or following periods of enforced inactivity. This helps to maintain or gain range of motion, to facilitate voluntary motor control, and temporarily reduces spasticity when the nerve supply to the muscle is intact. This procedure involves sending small electrical impulses through the skin to the underlying nerves and muscles to create an involuntary muscle contraction.
Produces symptoms of urinary urgency, with or without urge incontinence, usually with an increased frequency of micturition. The strong, sudden need to urinate is usually caused by involuntary contractions of the bladder or 'bladder spasms'.
Daily training programme to strengthen the muscles that support the uterus, bladder and other pelvic organs and help prevent accidental urine leakage. Also called Kegel exercises or pelvic muscle rehabilitation.
Loss of muscle tone and/or ligamentous elasticity resulting in the descent of the uterus or other pelvic organs into the vagina. If severe, the prolapse can protrude out of the vaginal orifice.
Simultaneous measurement of bladder pressure and flow rate during the voiding phase of the micturition cycle. The test is used to assess the process of bladder emptying. For example, bladder outflow obstruction can be diagnosed if there is a low urinary flow rate in conjunction with a raised bladder pressure during voiding.
A behavioural management programme that is used to encourage people to initiate their own toileting. It usually involves positive reinforcement and education of both the person with incontinence and their carer(s).
Photographic recording, using a gamma camera, of the distribution of a radioisotope (radioactive substance) given by injection. The radioisotope accumulates in the kidneys, allowing pictures to be produced showing details of both kidney structure and function.
A condition that exists when either part or all of the sacrum is absent due to a failure of the sacral spine to develop normally. In many cases, some or all of the nerves that supply the pelvic organs will also have failed to develop normally.
A condition in which the bones of the spine do not close due to a failure of normal development in the fetus. In cases of myelomeningocele, the bony abnormality is accompanied by abnormal development of the spinal cord or nerves and their covering membranes, which leads to abnormalities in the nerve supply to the lower limbs and pelvic organs.
A general term that encompasses a number of different developmental abnormalities of the spine and spinal cord, of which spina bifida is an example.
Stress urinary incontinence describes a symptom, a sign and a diagnosis, although it is only following urodynamic investigation that a diagnosis of urodynamic stress incontinence can be made. This condition is defined as 'the involuntary leakage of urine during increased abdominal pressure in the absence of a detrusor contraction'.
Person to receive a diagnosis or ruling out of cancer within 28 days of being referred urgently by their GP for suspected cancer. For further details, see NHS England's webpage on faster diagnosis of cancer.
A procedure that restores bladder control for people who lose urine when they cough or exercise. The urethral tape procedure involves positioning an artificial tape under the urethra, which is the tube that runs from the bladder through which you urinate. The tape will then rest like a hammock under the urethra, giving support and maintaining continence. A urethral tape consists of a thin mesh ribbon that is placed in order to provide support to the urethra. Urethral sling surgery involves placing a sling around the urethra to lift it back into a normal position and to exert pressure on the urethra to aid urine retention. The sling is attached to the abdominal wall. Also see autologous fascial sling surgery.
Investigation of the function of the lower urinary tract (the bladder and urethra) using physical measurements such as urine pressure and flow rate, as well as clinical assessment. Video-urodynamic investigations involve using a dye to fill the bladder enabling X-rays of the lower urinary tract to be taken during filling and emptying of the bladder.