Multiple Sclerosis (MS) is an inflammatory DeMyelination condition which frequently begins in early adulthood and which affects multiple sites usually over a prolonged period of time.

It can result in major disability which persists for decades. As with all pathologically defined neurological disorders there are three stages through which a patient with MS passes: investigation, diagnosis and treatment/management.

Until recently the main medical focus has been on investigation and diagnosis while much of the research activity has concentrated on the search for improved understanding of the disease as a step towards its ultimate cure.

Investigation and subsequent diagnosis have been greatly enhanced by the use of Visual Evoked Potentials which demonstrate subclinical involvement of the Optic Nerve and, or recently, Magnetic Resonance Imaging (MRI) which shows the evolution of the disease process during life. (Paty, McFarlin, McDonald, 1991)

The fact that there is as yet no cure for MS and that it is a chronic and frequently progressive disorder means that management is a lengthy and ever changing process; so, while investigation and diagnosis may be completed in a matter of weeks the management of a patient with MS continues for many decades.

Furthermore, as MS affects younger adults, often supporting young families and in the early stages of their career, this chronic disabling process carries with it major socio-economic implications which must be addressed. (Inman, 1984)

In recent years the importance of patient management has been increasingly recognized, partly as a result of awareness of the socio-economic implications and partly stimulated by patient demand, actively supported by the Multiple Sclerosis Societies. (Multiple Sclerosis, 1993)

Management

The course of MS may be usefully divided into four stages although not all cases travel the entire course. Each stage poses its own management issues. While all are important it is only at stages 3 and 4 that major input from community and hospital services is required.

Stages in the Course of MS

1. Initial
   (diagnosis)
2. Early
   (little disability)
3. Later
   (moderate disability)
4. Advanced
   (severe disability)

This artificial subdivision must be qualified by acknowledging the wide variation in disease activity. The majority of patients have an initial Relapsing/Remitting course in which remission after attacks varies in quality.

After a variable period of time, this may be followed by the development of progressive disability (Secondary/Progressive).

However, it is well recognized that a significant minority of patients (20-30%) do not develop major disability even 20 years after diagnosis.(Confavreux, Aimard, Devic, 1980)(Thompson, Hutchinson, Brazil et al. 1986) (Weinshenker, Bass, Rice, 1989)

There is also a small group of patients (less than 10% of the MS population) who suffer progressive disability from outset (Primary/Progressive). (Thompson, Kermode, Wicks, 1991)

Unpredictability is one of the most difficult aspects of the disease for patients, their families and professionals, to come to terms with during stages 1 and 2 of the disease. The threat and uncertainty become for some people worse than the reality.

At present it is not possible to predict outcome at the time of diagnosis on the basis of clinical presentation or Immunological findings, though MRI at the time of initial presentation may be of some value in predicting the development of irreversible disability. (Paty, Koopmans, Redekop et al. 1992) (Morrissey, Miller, Kendall et al. 1993)

There is some evidence that the level of disability after five years of onset may help predict future course. (Kurtzke, Beebe, Nagler et al. 1977)

Initial Stage

The management of a patient with MS begins at the time of diagnosis and its success is strongly influenced by four important factors determined at this early stage.(Scheinberg, Holland, Kirschenbaum, 1981)

1. the certainty with which the diagnosis is made
2. The clarity with which this information is imparted to the patient
3. The support which the patient receives subsequently. Often the process of initial diagnosis is not an easy time to ask questions or absorb information
4. The on-going availability to the patient of information regarding the diagnosis and what it does and does not imply

For the reasons outlined above this is unlikely to be achieved in one or two consultations.

It is essential, if the patient is to come to terms with the diagnosis and play an active part in his/her own management, that this period is correctly managed.

The bitterness and resentment which ensues if the patient discovers their diagnosis accidentally or feels discarded by their doctor may have a profound effect on their subsequent ability to trust and accept advice and to cope with the condition.

It is also important that the patient knows where to find further information, though often this may not be availed of for some time. (McLellan, 1989) In some countries educational programmes have been instituted to address this area. (Verdoodt, 1991)

Early Stage

During this stage the patient suffers occasional relapses of varying severity (average one every two years) but usually recovers well.

The patient's main concern may focus on fear of becoming disabled but they may require advice regarding having a family and decisions regarding economic planning, employment and housing.

Later Stage

This patient group has established impairment resulting in both disability and handicap. Management should aim to maximise functional independence by minimising disability and handicap and maintaining as far as possible their role in the family, workplace and community.

For each persisting disability and handicap there will be specific coping strategies which can be taught to the person and/or their carer with appropriate expertise and monitoring.

There must be a clear differentiation by the patient and the professionals between monitoring of spontaneous remission after a relapse and the seeking of newly required skills for disability which persists.

Advanced Stage

The population of patients who develop severe disability and become dependent in both mobility and activities of daily living pose particular problems and it is no coincidence that a significant proportion of patients in Young Disabled Units (YDU) suffer from MS - far in excess of their prevalence in the population.

The diversity and severity of problems means that such patients are a huge burden in the home and more specifically on their carer. If the community cannot give the appropriate support necessary to both patient and carer then it is impossible to keep the patient at home.

Admission to long term institutions does not relate directly to disability but to the ability and willingness of the carer to look after the patient. (Heller, Swindle, Dusenbury, 1986)

This is related in part to the level of community support and relief available, but also significantly depends on the ability of the person with MS to recognize that they are not alone in having priorities and the needs of the carers must be also acknowledged.

Much of the rehabilitation input at this stage will also concentrate on instatlling equipment in the house to allow the patient more independence and/or lessen the burden on the carers (both family and other attendants).

There is also a very important role teaching the carers how best to cope with their physical tasks and best handle any cognitive or behavioral problems which may be present. Evironmental controls may be particularly useful and regular respite admissions are an essential component of this support system.

Such respite admissions can be an acute requirement for crisis managment but when they are elective they should be planned to correspond with a specific holiday or other activity of the carer rather than at the convenience of the admitting institution.

Although MS affects some CNS White Matter areas more frequently than others none are exempt and, as a consequence, the range of potential problems is very wide.

MS may affect cognition, vision, balance, mobility, upper limb dexterity, bladder and sexual function. The presence or severity of any particular problem is not directly related to the duration of illness or overall disability.

While none of these problems are unique to MS the range is daunting and management is further complicated by the way in which problems interact with each other.

The ability to cope with bladder dysfunction for example depends not only on the bladder mechanism but also on mobility, upper limb dexterity, cognitive ability and architectural barriers.

The management of this multiplicity of interacting problems requires the expertise of a wide range of disciplines and as the problems interact so must the disciplines involved.

Therefore it is essential that patients can access a thorough assessment which can produce what might best be described as a disability profile, and that this assessment is carried out by a closely integrated multidisciplinary team experienced in Neurology (Table 1)

If an individual problem is managed in isolation the outcome is less likely to be successful. Particular attention must be paid to the areas of Cognitive Impairment and fatigue which can have major impact on the rehabilitation process.

Cognitive Impairment occurs more frequently than previously anticipated, particularly, but not exclusively, in patients with marked physical disability. (McIntosh-Michaelis, Roberts, Wilkinson et al. 1991) (Peyser, Becker, 1984)

Medication may be useful in a number of areas and some (but not all) of those more commonly used are shown in Table 2. However, in the main such input is only useful if it is done in conjunction with the appropriate therapy and medical management.

Table 2

* Clean intermittent self catheterisation

Meeting the Needs of the Disabled MS Patient and Care Giver

There are three essential components to the planning of a management programme for patients in this group:

• assessment of disability and handicap and identification of the consequent needs.
• an appropriate and effective method of care delivery
• awareness of the impact of the illness on family, employer and carer