MS Management Vol 1 No 1, Apr 1994
Institute of Neurology,
Head, Neurorehabilitaiton section, Dept of Clinical Neurology,
P L Colville MBBA, FAFRM, RACP
P Ketelaer MD
D W Paty MD FRCP
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)
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
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)
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)
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)
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)
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.
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.
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.
* 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 Need
This is most appropriately carried out by a multidisciplinary team. It is important to appreciate that the need as perceived by the patient, the carer and the professionals may differ considerably and it is essential that in the development of assessment of need schedules these differences are taken into account.
Delivery of Care
Many of the problems which affect patients with MS require active management, usually involved a combination of skills (even the services of an accountant can be a very significant contribution).
This is particularly true of areas such as spasticity, bladder dysfunction and ataxia but also applies to areas such as fatigue management, Cognitive Impairment and pain.
It is not unusual for a number of these problems to coexist and the question that needs to be addressed is, how must the necessary care for each problem be modified to allow for the other identified needs of that person. The resources currently available and the interaction between different needs will both modify management.
While factors such as availability of resources and geographical distribution of patient population will influence the way in which care may be delivered, the guiding force ought to be the underlying aim of maximising functional independence and autonomy which usually means maintaining the patient within the community whenever possible.
It may be argued therefore that the ideal place to manage the patient is in the community itself. However this may result in stretching of resources such that they become inefficient.
It is also dependent on excellent communication between the various disciplines involved which may not always be possible and appropriate expertise which is not always available. (Battaglia, 1991)
At the other extreme the acute hosptal setting is far from ideal and this role might best be restricted to the management of patients who become acutely disabled following a relapse and for the investigation of specific problems such as swallowing or respiratory dysfunction.
There has been an increasing emphasis on the role of the neurorehabilitation unit in the hospital care of patients with MS, providing pa bridge between the acute hospital setting and community care. (Reding, LaRocca, Madonna, 1987)
At present the majority of neurorehabilitation units are inpatient (Schapiro, Soderber, Hooley et al. 1988) and while this allows integrated, goal orientated rehabilitation programmes to be undertaken it does take the patient away from their home, is costly, particularly in terms of nursing staff, and is restricted in its admission policy.
The alternative which has been introduced in a number of countries, notably the USA, Australia and some European countries including Belgium and Italy, is the establishment of outpatient day units which offer comprehensive outpatient rehabilitation service. (Ketelaer, 1992) For such a system to work it si essential that the unit be accessible to the patient and also have close links with the community.
In this way it avoids duplication of resources, maximises the effectiveness of care delivery and ensures that any intiatives instigated while the patient attends the unit are sustained in the community. Follow-up and monitoring is easier for a day unit than an inpatient service since it commences during that programme.
This overlap between the community and the rehabilitation services could be strengthened by encompassing the concepts of outreach and in reach and by holding regular case conferences involving community workers.
If all three facilities (community and both inpatient and outpatient rehabilitation services) were made available the decision as how best to manage a patient could be governed by the particular presenting problem in the contest of the background disability.
For example: patients with severe Cognitive Impairment might need to be assessed in an inpatient unit but will be managed in the community where the limitations of poor carry-over could be minimised.
Similarly patients suffering from persistent fatigue can be appropriately assessed in an inpatient or day outpatient programme where their required rest periods can be determined. Follow-up ideally requires a domiciliary service.
In summary, the needs of the MS population would best be met by a comprehensive service in which the outpatient unit would best be met by a comprehensive service in which the outpatient unit would link community care and inpatient management.
It is essential that multidisciplinary clinical audit be an integral part of such a system. This would include the use of outcome meausres addressing impairment, disability and handicap, as laid out in the IFMSS record of Minimal Disability (MRD), together with a measure of Quality of Life.
Such measures will give some indication as to the efficacy of the rehabilitation programme and point to areas of potential improvement, but a major problem is the potential of the disease itself to produce remission or deterioration.
Equally important, though not without the same difficulty, would be a method of assessing whether or not the agreed goals were achieved: ie audit of outcome in relation to the goals that were set.
Finally, it is essential to assess the rehabilitation process through systematic overview such as Anticipated Recovery Pathways, (Olivas, Del Togno-Armanascou, Erisksen, 1989) recently amended for MS in the form of an Integrated Care Pathway. (Rossiter, Thompson)
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The International Federation of Multiple Sclerosis Societies its servants or agents will have any liability in any way arising from information or advice that is contained in MS Management. The statements or opinions that are expressed in the magazine reflect the views of the authors only.
Copyright ©1994 International Federation of Multiple Sclerosis Societies
MS Management Vol 1 No 1, Apr 1994