Multiple sclerosis (MS) is the most common cause of chronic neurological disability in young adults. In Kent, the prevalence of MS is approximately 115 per 100 000 patients.1
The average local GP with a list of 2000 patients will care for between two and four affected patients, of whom one or two will require significant medical support.
The nGMS contract for general practice has created an opportunity for GPs to address the needs of MS patients by means of a national enhanced service for MS. However, whether funding is universally available for 2004/2005 throughout the UK is not clear; it is not currently available in our local PCT.
Where such schemes are available, however, they should enable the primary healthcare team to work closely with patients and their families and encourage close interaction with other support services.
A national enhanced service for MS
The national enhanced service will fund several important aspects of MS care (Box 1, below).
|Box 1: Service outline|
|The national enhanced service for MS will fund practices to:|
Each practice contracted to provide the service will receive £92.90- £144.52 per patient per annum in 2004/2005; these figures will be increased by 3.225% in 2005/6.
A recent study reported that most GPs did not feel comfortable about using reflex hammers and a tuning fork to diagnose a patient complaining of difficulty in walking or paraesthesiae.2 In addition, most MS patients have difficulty in gaining access to neurological services, especially when their symptoms are particularly troublesome or deteriorating rapidly.3
Aside from the variability and complexity of symptoms, the management of MS patients is made even more difficult by the way these symptoms interact. Management of one symptom by drugs can exacerbate another, for example antispasticity drugs can make fatigue worse. It is therefore important to establish a well coordinated multidisciplinary team, which can manage these patients in accordance with the NICE guideline on multiple sclerosis. 4
In our clinic at the Darent Valley Hospital, we have a consultant neurologist, a GP with a Special Interest, an MS therapy support nurse, physiotherapists, occupational therapists and speech and language therapists as well as continence advisers and volunteers from the MS Society.
We have designed a standard clerking sheet that forms the basis of a personal health plan and enables the team to keep track of problems experienced by the individual patient. This sheet includes details about diagnosis, dates of investigations, disease type, current treatments, relapse history and social support.
The plan, which is completed in the presence of the patient and carer, can be reviewed and updated as frequently as necessary. It can be used as an audit and communication tool by the practice and forms the basis of the annual multidisciplinary review, as well as enabling us to assess and monitor every patient regularly.
The frequency of assessments is likely to depend on the course of the individual’s MS. Assessments should include a review of physical symptoms and of the effect of medication, and allow a check to be made on the patient’s broader health needs as well as the effectiveness of symptom control techniques.
A diagnosis of MS can be made only when there is evidence of anatomical and temporal demyelination.5 The most common presenting symptoms are, in order of frequency: weakness (occurring in 40% of patients), optic neuritis (22%), paraesthesiae (21%), diplopia (12%), micturition problems (5%) and vertigo (5%). An MRI scan is used diagnostically to demonstrate involvement of disseminated anatomical sites and thereby fulfil the diagnosis of MS using the McDonald criteria (see Table 1, below).
|Table 1: Making the diagnosis 5|
|Clinical presentation||Additional data needed to make a diagnosis of MS|
|Two or more attacks; objective clinical evidence of two or more lesions||None|
|Two or more attacks; objective clinical evidence of one lesion||Dissemination in space demonstrated by MRI or
Two or more MRI-detected lesions consistent with MS plus positive CSF or
Await further clinical attack implicating a different site
|One attack; objective clinical evidence of two or more lesions||Dissemination in time demonstrated by MRI or
Second clinical attack
|One attack; objective clinical evidence of one lesion (clinically isolated syndrome)||Dissemination in space, demonstrated by MRI or
Two or more MRI-detected lesions consistent with MS plus positive CSF and
Dissemination in time, demonstrated by MRI or
Second clinical attack
|Insidious neurological progression suggestive of MS||Positive CSF and
Dissemination in space, demonstrated by: nine or more T2 lesions in brain or
two or more lesions in spinal cord or
four to eight brain lesions plus one spinal cord lesion or
Abnormal VEP associated with four to eight brain lesions plus one spinal cord lesion demonstrated by MRI and
Dissemination in time demonstrated by MRI or
Continued progression for 1 year
A unilateral delay in visual evoked potentials is the most sensitive indicator of previous optic neuritis.6
On lumbar puncture, the presence of oligoclonal bands in the cerebrospinal fluid but not in the serum indicates inflammation of the central nervous system and is seen in 95% of MS patients.
Types of MS
The four main types of MS are:
- Relapsing-remitting MS, characterised by relapses followed by periods of full or partial recovery; 85% of patients will have MS that is relapsing-remitting;
- Secondary progressive MS, characterised by progressive accumulation of disability without overt relapses or remissions, occurring in 50% of MS patients;
- Primary progressive MS (10% of patients), characterised by continual worsening of symptoms from onset of the disease;
- Benign MS, which can only be diagnosed retrospectively in patients who remain fully functional without significant disability for at least 15 years after initial symptoms; this type occurs in 10% of MS patients.
The symptoms most easily treated are spasticity and urinary dysfunction. Other symptoms that can be addressed include fatigue, tremor, depression and erectile dysfunction (Box 2, below).
|Box 2: Symptoms of multiple sclerosis|
|The symptoms of multiple sclerosis are related to the site where the lesions of demyelination occur:|
Every MS patient with persistent spasticity or spasms must be referred to a neurophysiotherapist for assessment and advice on passive stretching to reduce tone and prevent contractures developing. Physiotherapists have a role in educating the family and carers and in providing patients with equipment adapted to their functional level.
Urinary dysfunction is not easy to treat but the benefits of treatment can be significant. Minimising embarrassment and social withdrawal will help to improve the patient’s self-esteem and may prevent depression.
The two main problems with urinary dysfunction are storage failure, causing frequency; or failure to empty, which causes hesitancy or retention.
Early referral to a continence nurse to establish post-micturition bladder volume is advisable. If the volume is greater than 100 ml, failure to empty is the main problem, and it is useful to teach the patient to carry out intermittent self-catheterisation, if he or she is capable of doing so. If the bladder empties completely but stores poorly, detrusor muscle hyperreflexia may be inhibited by using anticholinergic agents such as oxybutynin.
Nocturia may be treated with nasal desmopressin spray at night to suppress urine production overnight. Several studies have shown that MS patients benefit from the support of specialist continence nurses who, as part of a multidisciplinary service, use a combination of practical techniques such as bladder training, self-catheterisation and advice on drug therapy.7
Fatigue is best managed in a multidisciplinary environment, and the MS nurse is vital in educating both patient and family.
The exact aetiology of MS-related fatigue is poorly understood; it may occur as a result of impaired conduction of the demyelinated fibres or by a combination of exertion or sleep disturbances caused by chronic pain or nocturia.
A recent study showed that, independently of disease type or duration, nerve fibre loss was significantly associated with increased fatigue in MS patients.8 This study found no correlation between the number of lesions and the perception of fatigue.
In addition to referral to the MS nurse, the patient may benefit from referral to an occupational therapist who can advise on conserving energy through adaptations to the home and work environment.
Involvement with the Government scheme ‘Access to Work’ helps some MS patients continue their careers for longer than they otherwise might.
Tremor is a particularly distressing symptom for MS patients and it may be difficult to treat.9 Referral to an occupational therapist for training in the use of weighted wristbands may help in some cases. Patients whose activities are limited by tremor should be assessed by a specialist rehabilitation team. Patients with the particularly unpleasant ‘red nucleus’ tremor may need to be referred for intermittent thalamic stimulation.
Pain is another common symptom, encountered in more than half of patients. This may be chronic pain, such as low back pain resulting from an abnormal posture, or extreme dysaesthesiae.
Acute pain syndrome occurs in 15% of MS patients and includes trigeminal neuralgia and L’hermitte’s symptom, a characteristic ‘electric shock’ sensation running down the back, induced by neck flexion. Subacute pain, such as optic neuritis, may last for weeks. While various medications may be tried for these situations, referral to an MS clinic is essential for full pain assessment, either by the MS nurse or neurologist.
Dysarthria and dysphagia
Dysarthria occurs in 51% of MS patients, according to one study.10 Patients with this symptom should be referred to the speech and language therapy department for assessment, speech exercises and training in the use of communication aids.
Dysphagia has also been reported in over 40% of MS patients and, again, patients should be referred to a speech and language therapist for videofluoroscopy to assess swallowing.
Depression is a common emotional complement of MS. It may arise secondary to a neurological lesion, or as a result of altered socioeconomic circumstances or pain. It is therefore important for GPs to identify those patients who may benefit from early psychological support and possibly early referral for counselling. It may be beneficial for a counsellor to become involved alongside a neurologist at diagnosis to improve patient care.
Tricyclic antidepressants may not only relieve depression but also treat neuropathic pain and act as a mild anticholinergic to relieve urinary frequency.
When relapse occurs
A relapse is defined as the occurrence of new symptoms or the reccurrence of old symptoms in the absence of a fever lasting for more than 24 hours.
It is important to rule out infection before starting the patient on steroids and a mid-stream urine test is essential to test for urinary tract infections.
Studies show that 10% of upper respiratory (adenovirus) and gastrointestinal infections arising in MS patients are followed by relapse, and about 30% of new episodes relate to infection.
There is little consensus as to whether to use oral or intravenous steroids in treating a relapse, and little agreement regarding the optimum dose regimen. However, it is important to limit the number of steroid courses to no more than three per year and to be aware that steroids should be considered if the relapse affects cerebellar function.
There is no place for indiscriminate use of steroids, and probably only 10-20% of relapses merit their use.
Referral for drug therapy
There are four disease-modifying medications available to treat MS, each of which reduces the frequency of relapse by about 30%. Three interferon beta preparations and glatiramer acetate are licensed for this use, and they are being prescribed by specialists under a ‘risk-sharing’ scheme set up by the NHS and the four drug manufacturers.
Patients with relapsing-remitting disease should be referred for consideration of treatment with interferon beta or glatiramer acetate, providing they:
- are able to walk 100 metres or more without assistance
- have had at least two clinically significant relapses in the past 2 years
- are aged 18 years or more
- have no contraindications – interferon should not be used in patients with a history of severe depressive illness, inadequately controlled epilepsy or decompensated hepatic impairment, and should be used with caution in patients with cardiac disorders or myelosuppression.
Patients with secondary progressive disease should be referred for interferon therapy providing they:
- are able to walk 10 metres or more with or without assistance
- have had at least two disabling relapses in the past 2 years
- are aged 18 years or more
- do not have any of the contraindications listed above.
The stopping criteria for disease modifying treatments include:
- intolerable side-effects
- pregnancy or the patient is planning to become pregnant
- occurrence of two or more disabling relapses within 12 months
- secondary progression with an observable increase in disability over a 6-month period
- loss of ability to walk, with or without assistance, persisting for 6 months or more.
The role of the GPwSI
Given the shortage of consultant neurologists in the UK at present, the role of the GP with a Special Interest (GPwSI) in multiple sclerosis is important and includes assisting the consultant neurologist with symptom management and supporting follow-up clinics.
GPwSIs in our area also monitor therapy, dosage and blood tests for patients taking disease-modifying treatments, carry out disability reviews and counsel patients on stopping therapy. Counselling patients at this time demands all the skills of general practice as this is often when MS patients realise the full impact of this incurable, chronic neurological disease.
Other roles for GPwSIs include managing relapse clinics, developing protocols to enable patients to remain in the community, facilitating the coordination of appropriate referrals and ensuring that communication among the team members is good.
GPwSIs might also assist in establishing a database to map out incidence of MS in the local area, and share examples of good practice by maintaining links with other MS specialists.
Training opportunities include the MS Society’s professional diploma in MS care, a distance learning diploma based at Leeds Metropolitan University. It covers epidemiology, anaesthesiology, general pathology, clinical features, diagnosis and management and organisation of care,and is aimed at all the specialties involved in MS care.
A distance learning masters degree in neuroscience with an MS pathway will be introduced in 2006.
- Compston A, Ebers G, Lassman H et al, eds. McAlpine’s multiple sclerosis, 3rd edition. London: Churchill Livingstone, 2001.
- Schon F,Hart P, Fernandez C. Is clinical neurology really so difficult? J Neurol Neurosurg Psychiatry 2002; 72: 557-9.
- Wade D, Green Q. A study of services for multiple sclerosis: Lessons for managing chronic disability. London: Royal College of Physicians, 2001.
- National Institute for Clinical Excellence. Clinical Guideline 8. Management of MS in primary and secondary care. London: NICE, 2002.
- Royal College of Physicians. Multiple sclerosis. National clinical guidelines for diagnosis and management in primary and secondary care. London: RCP, 2004.
- Cook S. Handbook of multiple sclerosis, 3rd edition. New York: Decker, 2001.
- Griffith G. Importance of continence advice for people with MS. Br J Nursing 2002; 136: 3-4.
- Tartaglia MC, Narayanan S, Francis SJ et al. The relationship between diffuse axonal damage and fatigue in multiple sclerosis. Arch Neurol 2004; 61: 201-7.
- Thompson A, McDonald I. Key advances in effective management for MS. London: Royal Society of Medicine, 1999.
- Thomas FJ,Wiles CM. Dysphagia and nutritional status in multiple sclerosis. J Neurol 1999; 246: 677-82.