Dec 18, 2002
British Journal of Nursing
Multiple sclerosis (MS) is the most common disease of the central nervous system (CNS) affecting about 85 000 people in the UK (Multiple Sclerosis Society, 2000). It is a chronic neurological disorder, often remittent (i.e. where patients experience periods of recovery), but ultimately progressive (i.e. where the disability does not go away after a relapse and progressively worsens between attacks) with gradually increasing disability. It affects scattered areas of myelin (the fatty substance which forms the sheath enveloping all larger axons of nerve cells in the nervous system) throughout the brain, spinal cord, and optic nerves. The primary lesion is damaged areas of myelin (known as plaques or lesions), with inability of the affected fibres to conduct impulses, followed by sclerosis or scarring.
The cause of MS is unknown, but evidence increasingly suggests that it is the result of an autoimmune attack by the body on its own myelin or the effects of a viral infection, or a combination of the two. There may also be a genetic component (Multiple Sclerosis Research Trust, 1999).
The onset of the disease is often monosymptomatic, with evidence of a single lesion of the CNS in 45% of cases (Multiple Sclerosis Research Trust, 1999). However, there may be symptoms indicating multiple lesions from the onset. Common sites for lesions are: in the optic nerve, giving rise to pain and blurred vision; in the brainstem or cerebellum, causing vertigo and double vision; and in the spinal cord, causing limb weakness and impaired urinary control (Multiple Sclerosis Research Trust, 1999).
Forty per cent of patients with MS have lumbar cord involvement and 18% have sacral cord involvement (Kobashi and Leach, 1999). The cerebral cortex and midbrain may also be affected. Lesions in any of these areas can affect voiding function. A total of 50-90% of all MS patients will experience bladder dysfunction during the course of the disease (Dula and Leach, 1991; Sirls et al, 1994; Bakke et al, 1996) and voiding dysfunction is the presenting symptom in 10% of patients (Sirls et al, 1994).
If there is disease high up in the spinal cord, e.g. in the cervical region, neural impulses between the micturition centre and the nerves to both the bladder and legs are likely to be affected (Betts et al, 1993; Koldewijn et al, 1995). These effects can be very distressing as they have an impact on not only the person's mobility but also the person's continence.
Many people with MS regard poor bladder control as one of the worst aspects of their condition (Multiple Sclerosis Research Trust, 1999). The symptoms of urgency and frequency along with the uncertainty of urinary incontinence can have a profound effect on the person's lifestyle.
Urodynamic studies with MS patients have shown that symptoms are usually the result of detrusor hyper-reflexia (Multiple Sclerosis Research Trust, 1999). Detrusor hyper-reflexia is a common feature of neurological incontinence and is caused by a spontaneous uninitiated detrusor contraction with or without the desire to pass urine, resulting in urinary urge incontinence. Often unaware of the range of treatment and management options available, people with MS suffer the embarrassment and restriction that bladder problems pose.
As well as the effect on their personal and social life, bladder problems can have a negative effect on people's working life, with many giving up their employment in the early course of their disease. For some this course of action has proven to be unnecessary and extremely distressing. Specialist advice can often provide appropriate treatment and management of bladder problems for many MS patients, enabling them to have improved quality of life and independence for as long as possible. However, some patients get by as best they can and only ask for help when they find they can no longer cope or when they reach crisis point.
The Multiple Sclerosis Society's (1997) Standards of Healthcare for People with Multiple Sclerosis sets out a framework to aid all those who work with people with MS, including their families and carers, to identify and meet their needs for quality healthcare services. In the recommended standards there are several points relating to access to: specialist advice; specialist multidisciplinary teams; expert advice on current researchbased methods of continence management; and specialist expertise in the management of bowel dysfunction (either separately or as part of existing continence services).
The author, in her role as a continence adviser, is a member of the Community Multidisciplinary Neurological Rehabilitation Service (MNRS) of Bolton Primary Care Trust. The MNRS is working towards meeting the recommended standards as set out by the Multiple Sclerosis Society. The role of the continence adviser is to help people with MS gain easy access to specialist advice for bladder and bowel problems through a one-referral process. The referral process allows patients to access the service of any of the disciplines within the team through one initial referral. Once the MNRS accepts a referral, no further referrals are necessary.
This article will demonstrate how the role of a continence adviser has been of benefit to people with MS. Although this article focuses on bladder management, it is accepted that bowel problems are also a common feature of MS.
The community MNRS was established in April 1996 with the remit of providing a comprehensive and coordinated range of services to people with an acquired or progressive neurological condition. The service aims to:
* Enable people to regain or improve their physical, social, and psychological wellbeing through appropriate assessment and treatment
* Enable people to function as independently as possible while providing support to the patients, their carers, and families.
Adults aged 16 years or over with an acquired neurological condition who require rehabilitation with input from two or more disciplines of the team (conditions such as head injury, spinal injury, stroke, epilepsy, MS, Parkinson's disease, motor neurone disease, brain tumours, and sub-- arachnoid haemorrhage) can be referred. The team comprises professionals in the following areas: physiotherapy; occupational therapy; speech therapy; podiatry; dietetics; psychology; and specialist nursing/spinal injuries.
Many of the referrals received by the team are patients with a diagnosis of MS, and their bladder problems are one of their major concerns. The continence adviser is employed full time within the continence advisory service but has become a valuable member of the MNRS, taking responsibility for all referrals in relation to bladder dysfunction.
Good quality assessment will define problems and a knowledgeable practitioner will be able to suggest solutions. The success of an assessment depends on a combination of interpersonal and clinical skills, and the right environment (Duffin, 1992). Thorough assessment is essential to identify the nature of the problem so that the appropriate intervention is made (Rashid and Hollander, 1998). This can be a challenge in any health or social care setting and is often complicated by the person's reluctance to discuss the problem.
People with urinary problems will tolerate symptoms up to a point but only when they feel that they are deteriorating will they seek help (Brittain et al, 2001). MS is a complex disease in which many different health professionals need to play a part. Joint assessments carried out by members of the multidisciplinary team have proven to be a vital component.
The key areas that are examined in the initial assessment are shown in Table 1. It is usually carried out by the physiotherapist (coordinator) of the neurological team or the occupational therapist (deputy coordinator). Interteam referrals are then circulated to the relevant disciplines within the team. Interteam referrals can be made to any of the professionals at any stage in the person's condition, eliminating the need for secondary referral by a GP or others.
Using an holistic approach with regard to patient assessment has meant that all aspects of the person's condition are taken into consideration. This is especially important in the case of MS patients because of their variety of clinical deficits. One of the major benefits of joint assessment for the continence adviser has been the input from the occupational therapist and the physiotherapist.
Fatigue is perhaps the most common symptom reported by patients with MS. A study by Vercoulen et al (1996) found that over 85% of MS patients experience fatigue daily and that it can be the predominant reason for disability. To experience bladder problems at the same time can be devastating and has a major impact on a person's quality of life. The continence assessment looks at the possibility of promoting continence and if that is not achievable then consideration is given regarding the best possible management.
The occupational therapist and physiotherapist can assess the person's level of function in relation to mobility, cognitive function, range of movement, and activities of living. This can be useful information for completion of the continence assessment. If the patient needs to be taught how to self-catheterize, because of incomplete bladder emptying, then it is useful to know that the patient has the manual dexterity and physical ability so to do.
Incomplete bladder emptying
The most common presenting urological coin plaints in MS are urgency, frequency, nocturia, and urge incontinence. Imitative symptoms occur in approximately 65% of MS patients with voiding complaints (Goldstein et al, 1982). Bladder dysfunction may be categorized as problems of urine storage and bladder emptying. Incomplete bladder emptying commonly occurs in spinal cord disease and is extremely common in patients with MS (Fowler, 1994). Failure of bladder emptying can be the result of detrusor sphincter dyssynergia or an acontractile bladder, which occurs in 5-20% of patients (Sirls et al, 1994).
In normal voiding when the bladder contracts, the external sphincter relaxes, allowing the passage of urine down the urethra. In some patients, and particularly those with neurological problems, both the bladder and the sphincter contract simultaneously, resulting in urinary retention. Patients may present with a variety of clinical pictures, including incomplete emptying, a total inability to void, recurrent urinary tract infections, urinary urgency, urge incontinence, and overflow incontinence (Kobashi and Leach, 1999).
The single most important investigation in establishing incomplete emptying is to measure the postmicturition residual volume. This investigation is part of the assessment process and will determine whether or not the patient has a residual volume of urine left in the bladder. This can be measured either by ultrasound of the bladder (bladder scanning) or by intermittent catheterization. A patient with a residual of 100 ml of urine or more may present with urinary frequency and urgency. Treatment with anticholinergics (see below) can exacerbate incomplete emptying so that voiding becomes more difficult (Multiple Sclerosis Research Trust, 1999). It is, therefore, essential to establish if a urine residual is present before considering the use of anticholinergics.
Urinary tract infections are common in MS patients often as a result of incomplete bladder emptying (Fowler, 1994). A midstream urine (MSU) specimen is obtained as part of the continence assessment and routinely sent for culture and sensitivity tests to the laboratory. The continence adviser uses a treat and repeat approach. If a urine infection is found to be present, antibiotic treatment is initiated by the GP and a repeat urine specimen is sent to the laboratory a week after treatment has been completed to exclude further infection.
Following this assessment, the GP and relevant consultants are notified of the findings with recommendations as to the appropriate action to be taken. This may be in the form of drug intervention, introduction of intermittent self-catheterization (ISC) or referral to the urologist for further investigations. Close liaison with the patient, GP, neurologist, and urologist is essential when planning a patient's care.
All options are explored fully before a treatment plan and realistic goals are agreed upon. The MNRS holds weekly multidisciplinary team meetings which provide the opportunity for case discussion, transfer of information, and an update on team issues. Patients are invited to attend the heath centre for assessment and treatment, if this is felt to be appropriate, and may be seen by several members of the team at that appointment. Joint assessment reduces the waiting time for patients and the need for several different appointments.
TREATMENT AND MANAGEMENT
Upper urinary tract complications such as hydronephrosis, renal insufficiency or renal failure have been reported in 15-20% of MS patients with bladder dysfunction (Blaivas and Barbalias, 1984). Therefore, preservation of the upper urinary tract is the prime objective when considering treatment, but successful management depends on a good understanding of the condition and knowledge of the treatment options. Patients with MS have complex needs and require time to consider these options.
The continence assessment (Table 2) is essential to establish the degree and type of continence problem. Some patients report that they feel medical staff ignore their bladder and bowel problems once their diagnosis of MS has been given. Potential misdiagnoses are occasionally encountered that may not be related to MS. Women may present with bladder symptoms as a result of weakened pelvic floor muscles. Men with MS often describe voiding symptoms similar to those of benign prostatic hyperplasia (enlargement of the prostate gland). The symptoms they describe are often hesitancy, decreased force of stream, sensation of incomplete bladder emptying, urine retention, frequency, urgency, and nocturia. It should, therefore, never be assumed that the problems are entirely as a result of MS.
Anticholinergic drugs can be of major benefit in treating symptoms of urgency, frequency, and nocturia (Shah and Leach, 2001). Over recent years more interest and greater awareness has led to increased choice in medication. The consensus of opinion is that drug therapy should generally be used in conjunction with other behavioural strategies and any contributing factors should be addressed (Button et al, 1998). Almost all drugs have side-effects and regardless of the drug chosen, the initial dose should be relatively low and titrated to balance side-effects.
Anticholinergics work by blocking the chemical transmission of acetylcholine, which causes the muscle to contract, thus diminishing unstable contractions of the bladder. However, anticholinergics are not suitable for everyone and are an inappropriate treatment if incomplete bladder emptying is identified. Failure of bladder emptying includes an acontractile bladder which occurs in 5-20% of patients (Sins et al, 1994). Detrusor acontractility typically results in a low pressure urinary retention. The combination of an anticholinergic and ISC is the optimal treatment strategy for patients with bladder symptoms as a result of MS who have both storage and emptying problems (Fowler, 1994).
ISC may seem a daunting task for many MS patients and their responses to this procedure are varied. The highest incidence of urological complications in female MS patients with bladder dysfunction occurs in those patients with long-term indwelling Foley catheters (Kobashi and Leach, 1999). Foley catheters are not a benign method of treatment when left in place indefinitely. They can result in severe urethral damage, stones, recurrent infections, urosepsis, hydronephrosis and, in some cases, malignancy (Sins et al, 1994). ISC is performed as a socially clean technique. Lapides et al (1974) demonstrated that the use of a clean technique did not lead to greater levels of infection than catheterization performed using a sterile technique. ISC can make a major difference to a person's quality of life by giving him/her greater independence.
The continence adviser carries out an initial visit to explain the procedure of ISC and to provide the patient with both written and verbal information regarding the technique. Samples of intermittent catheters along with the relevant literature are also shown to the patient. Most people with sufficient determination can master the technique. Once the patient has been taught and feels confident, the role becomes a supportive one.
If the patient is unable to perform the ISC procedure, possibly because of poor dexterity, a partner or carer may be approached and taught how to do it. It should never be assumed that carers will take on the responsibility of the ISC procedure and discussion should always take place between the patient and the carer or partner before a decision is taken.
The care can be referred on to the district nurse but many MS patients do not readily accept the service as they see it as another step nearer to them losing their independence. The GP is kept informed throughout the process and a referral made to the urologist if not already involved. This is to monitor any changes that may occur with the upper urinary tract.
Nocturia is another presenting problem for patients with MS. Having to get up several times at night to pass urine has a very disabling effect on patient and partner (Fowler, 1994). The use of the vasopressin analogue, desmopressin spray, taken at night can effectively combat this problem. A study by Valiquette et al (1996) with MS patients showed that desmopressin reduced nocturia by more than 50% to an average of one episode per night and achieved total control of nocturia in onethird of patients' nights, increasing the maximum hours of sleep by up to 4 hours. Kinn and Larsson (1990) also carried out a study using desmopressin in a double-blind crossover trial on 13 patients with advanced MS. In female patients with MS, desmopressin proved to be valuable in lowering nocturnal diuresis.
Bladder stimulation may also be worth considering to assist with bladder emptying. This can be carried out using a hand-held device such as the Queen Square bladder stimulator, a device for assisting emptying of the neurogenic bladder (a bladder which fails to empty completely). The head of the device vibrates when pressed against any part of the body and there is a clear audible buzzing when it is used. A vibrating stimulus applied to the suprapubic region facilitates bladder emptying when the person is sitting on the toilet and significantly improves urinary symptoms in patients with neurogenic bladders (Dasgupta et al, 1997).
The study by Dasgupta et al (1997) found that the best response occurred in those patients with detrusor hyper-reflexia (involuntary urethral relaxation), and incomplete emptying, who were still relatively mobile. The device is a small hand-held portable device, which is easy to use, even by patients with poor hand function. In some people it helps start micturition, improves flow, and reduces the amount of urine left behind. Unfortunately, if there is a progression in the neurological disease, the device may become ineffective and ISC will be necessary (Multiple Sclerosis Research Trust, 1999).
Bladder retraining is used to describe the educational and behavioural approach to re-establishing control of urinary incontinence. For example, in 1972, Frewen described a regime using timed bladder training with a disciplined fluid intake. Some patients may benefit from timed voiding, fluid restriction and dietary modification, which involves avoiding stimulants such as caffeine. If used in combination with anticholinergic medications and ISC, bladder retraining can provide excellent preservation of renal function and quality of life (Kobashi and Leach, 1999).
Neuromuscular electrical stimulation
Working in a multiprofessional continence team as well as the community neurological rehabilitation team has enabled the author to refer directly to the specialist physiotherapist for continence where electrical stimulation is available as a treatment. Neuromuscular electrical stimulation can be used in the treatment of both stress incontinence and detrusor instability. It involves the passage of an electrical current between two nodes on a vaginal or anal probe stimulating the nerves which supply the pelvic floor musculature and causing the muscles to contract (Laycock, 1992).
Primus and Kramer (1996) researched the use of maximal electrical stimulation for the treatment of neurogenic and non-neurogenic urgency and urge incontinence. Their research revealed that the benefits of electrostimulation in neurological conditions were short-lived. They concluded that 59% of patients found the treatment subjectively beneficial although this could not be measured objectively. With MS patients, relapse (i.e. a deterioration in the bladder symtoms) occurred within 2 months. Retreatment showed immediate improvement. The conclusion was that MS patients needed daily home stimulation treatments.
Not all people with MS are fortunate enough to have the support of a community neurorehabilitation team and a continence adviser. The role of the continence adviser for people with MS cannot be overstressed, particularly when a majority of patients are unaware that solutions exist to many bladder problems (Barnes and Jones, 1997). Clinical nurse specialists in continence care have an essential role and are able to give cost-effective care, advice, and treatment to people with bladder and bowel dysfunction. Studies have demonstrated how the continence adviser can assist patients with bladder problems (Royal College of Nursing, 1997).
With the increasing number of MS patient referrals received through the neurorehabilitation service, the author has now established a joint assessment clinic, based in the community, working alongside a consultant urologist. The clinics commenced in January 2002, providing MS patients with a continence assessment, treatment and management options, and a source for links to other services. If necessary, patient appointments can be coordinated with other professionals in the neurorehabilitation team to avoid duplication in clinic attendance for patients.
Between five and six patients are seen at each clinic session with each patient being given a 30-minute appointment. The continence clinic is currently held every 2 months and is being audited at the end of December 2002. Referrals are received directly from GPs, neurologists, healthcare professionals, and patients wanting to self-refer.
Working within the MNRS has enabled the continence adviser role to develop
by raising awareness of how a continence assessment can make a difference.
It has involved the sharing of expertise and assisted in the process of
providing a seamless service. A multidisciplinary team approach is essential
if treatment is to be successful, health is to be improved, and there is
to be long-term wellbeing and quality of life for patients with MS.
© 2002 British Journal of Nursing