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Principles of neurological rehabilitation 

Principles of neurological rehabilitation
Chapter:
Principles of neurological rehabilitation
Author(s):

Michael Donaghy

DOI:
10.1093/med/9780198569381.003.0160
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Subscriber: null; date: 18 August 2018

  1. 6.1 Introduction [link]

  2. 6.2 A model of illness and rehabilitation [link]

    1. 6.2.1 The WHO ICF model of illness [link]

    2. 6.2.2 Neurological illness [link]

    3. 6.2.3 The person [link]

    4. 6.2.4 The person’s context [link]

    5. 6.2.5 The person—choice and quality of life [link]

    6. 6.2.6 Rehabilitation—structure, process, and outcome [link]

    7. 6.2.7 The utility of this analysis [link]

  3. 6.3 Evidence supporting rehabilitation [link]

    1. 6.3.1 Is the rehabilitation process effective? [link]

    2. 6.3.2 What strategies are most effective? [link]

    3. 6.3.3 Evidence supporting specific interventions [link]

  4. 6.4 Specific diseases [link]

    1. 6.4.1 The role of the doctor [link]

    2. 6.4.2 Acute onset disability: stroke and injury to the brain and spinal cord [link]

    3. 6.4.3 Fluctuant and unpredictable disease: multiple sclerosis [link]

    4. 6.4.4 Progressive disorders: neuromuscular disorders [link]

    5. 6.4.5 Stable disease present from childhood: cerebral palsy [link]

  5. 6.5 Some specific situations [link]

    1. 6.5.1 Spasticity [link]

    2. 6.5.2 Assessment of activities [link]

  6. 6.6 Conclusion [link]

6.1 Introduction

Neurology has an undeserved reputation for being a speciality where diagnosis requires great intellectual effort, although from which little therapeutic intervention flows. The reader will form their own opinion about the difficulty of making diagnoses, but now neurological rehabilitation can offer all patients great help subsequently. Other chapters discuss the roles of specific medical and surgical treatments in transforming neurological patients’ lives; this chapter discusses the role of neurological rehabilitation in focusing primarily on reducing limitations on patient activities rather than by detailing the specific nature of these individual interventions.

Neurological rehabilitation can be defined as a process that aims to optimize a person’s participation in society and sense of well-being. This definition highlights several important features: rehabilitation is not a particular type of intervention; the focus is on the patient as a person; the goals relate to social functioning, as well as health or well-being; it is not a process restricted to patients who may recover, partially or completely, but applies to all patients left with long-term problems. The contrast to traditional neurology is in the broader scope, extending well away from the underlying pathology but always being fully informed by the paramount importance of the primary diagnosis.

This chapter will start by giving a fuller description of rehabilitation in terms of structure, represented by the resources needed, process, consisting of what happens, and outcome, defined by the goals. Subsequently the general evidence supporting neurological rehabilitation as a process is reviewed. It is not practicable to review the wide range of high class randomized controlled trial evidence investigating different and detailed aspects of the process. Some specific diseases and specific clinical problems are considered in Section 6.4.

Neurological rehabilitation has a sound theoretical and conceptual basis derived from the World Health Organisation’s International Classification of Functioning, the WHO ICF (Wade and Halligan 2004) and from a general problem-solving approach (Wade 2005). There is strong evidence supporting its effectiveness as a process, and reasonable evidence in support of some specific treatments. The approach of neurological rehabilitation extends the intellectual challenge of neurology; in most clinical situations the physician and the wider rehabilitation team have to make pragmatic decisions based on incomplete information concerning many important factors.

6.2 A model of illness and rehabilitation

Although the goal of rehabilitation is to optimize social participation, its main objective is to increase the range of activities a person can undertake. Activities are also referred to as functions sometimes; activity is the obverse of disability. This section discusses in detail the analysis of factors that cause disability, a necessary prelude to starting treatment, and then it discusses in detail the nature of rehabilitation. This should provide the necessary basic skills to undertake at least some rehabilitation of any patient.

6.2.1 The WHO ICF model of illness

Rehabilitation focuses on changing behaviour in its broadest sense. In order to change behaviour it is necessary to analyse the factors that determine and potentially limit any person’s behaviour, and the way that they interact with their environment. Although many complex models of behaviour exist, most have been derived for other uses and from other backgrounds. Rehabilitation needs a model that is relatively simple and that is relevant in all circumstances appertaining to illness.

The World Health Organisation faced this problem when developing the International Classification of Impairment, Disability and Handicap, WHO ICIDH (World Health Organisation 1980) and used ideas then being developed by sociologists. It was expanded by the World Health Organisation for the International Classification of Functioning (World Health Organisation 2000) and has since been further adapted and modified to be useful in health services generally (Wade and Halligan 2004).

The expanded WHO ICF model will be explained here. In addition to providing a powerful analytic tool, it provides a coherent and consistent terminology which should facilitate communication. An overview is shown in Tables 6.1 and 6.2.

Table 6.1 The World Health Organisation’s International Classification of Functioning rehabilitation model—the person

Level of illness

Term

Synonym

Comment

Pathology

Disease/diagnosis

Refers to abnormalities or changes in the structure and/or function of an organ or organ system

Impairment

Symptoms/signs

Refers to abnormalities or changes in the structure and/or function of the whole body set in personal context

Activity (was disability)

Function/observed behaviour

Refers to abnormalities, changes, or restrictions in the interaction between a person and his/her environment or physical context (i.e. changes in the quality or quantity of behaviour)

Participation(was handicap)

Social positions/roles

Refers to changes, limitations, or ‘abnormalities’ in the position of the person in their social context

Table 6.2 The World Health Organisation’s International Classification of Functioning rehabilitation model—the context

Contextual factors

Domain

Examples

Comment

Personal

Previous illness

Primarily refers to attitudes, beliefs, and expectations often arising from previous experience of illness in self or others, but also to personal characteristics

Physical

House, local shops, carers

Primarily refers to local physical structures but also includes people as carers (not as social partners)

Social

Laws, friends, family

Primarily refers to legal and local cultural setting, including expectations of important others

Temporal

Shortly after a stroke

This covers two separate domains. The first concerns the stage the person is in within their life trajectory. The second is the stage within the illness trajectory

Choice

Free will

This could be considered either as a sub-category of personal context, or as a sub-category of the person (i.e. at the same level as impairment). However within an explanatory model it is best conceived of as a separate phenomenon

Note: This model is usually prefaced with the words: ‘In the context of illness, …’

6.2.2 Neurological illness

The starting position is a person who believes that they have a disease and consider themselves ill. The term illness will be used here to refer to all aspects of the state of having, or assuming that there is a disease. It encompasses both the symptoms and signs, and any changes in behaviour and role associated with the perception of having a disease. Specifically it encompasses the sick role (Parsons 1951) in which a person may absolve themselves legitimately from many expected roles and behaviours; in return society expects that the person will strive to return to full role activity as soon as possible. Ultimately illness can be conceived of as the state of suboptimal interaction between a person and his or her environment both physical and social.

The challenge is to analyse the illness in a way that allows both an understanding of the situation and identifies the most effective interventions. Two aspects need consideration: the person who is ill, and their context.

6.2.3 The person

Traditionally, using a biomedical model, doctors have collected information about symptoms and looked for signs in order to deduce which organ(s) is malfunctioning and what type of process is affecting it. Recently more specialist investigation has allowed closer examination of organs to facilitate the diagnostic process. However this has been a one-way logic, using symptoms to deduce disease but not considering either the relationships between symptoms and disability or that symptoms may arise in other ways.

An increasing concern by doctors and others with the wider consequences of disease has led to the development of broader models of illness. One well-known model is the biopsychosocial model (White 2005) which is widely referred to in the back pain and psychiatric literature with two important features:

  • recognition that psychological and social factors are important moderating influences; and

  • the concept of hierarchical systems.

The WHO ICF expanded model (Wade and Halligan 2004) is a further development of the original biopsychosocial model which:

  • Specifies four hierarchical levels concerning the ill person;

  • Introduces the concept of context to include four domains; and

  • Recognizes the importance of the person in terms of choice and quality of life.

The expanded WHO ICF model has been used successfully to structure national guidelines on the management of conditions such as stroke and multiple sclerosis (ICSWP 2004; NICE 2003), and is now the predominant model within neurological rehabilitation (Table 6.1).

The focus of the WHO ICF model is the ill person, or patient. Changes or abnormalities in the person as part of an illness are referred to as impairments and are better known as symptoms and signs.

The person is comprised of a host of organs, and each is itself a complex system that may malfunction. This dysfunction, with or without altered structure, is known as pathology, or the disease or diagnosis; diagnosis is an ambiguous word as it confuses the process of diagnosis with the outcome arising from that process.

The person will interact with his or her physical environment to achieve goals, and performance within this system of person and physical environment is known as behaviour with alterations originally and commonly being referred to as disability. Within the WHO ICF the interactions between a person and his or her physical environment are now referred to as activities and changes are referred to as limitations in activities.

Finally the person will interact with other people socially, establishing their roles and position within society. Changes in the interaction between a person and his social environment were once referred to as handicap, but they are now referred to as restrictions on social participation.

It is worth noting that activities are externally verifiable, and require no immediate interpretation. By contrast, participation entirely depends upon the attribution of meaning, by others and by the person, to the activities that are undertaken, especially to vocational activities such as work and leisure.

6.2.4 The person’s context

The section above has already introduced the importance of the environment by including the physical and the social environments as parts of two systems—activities and participation. There are two other important contextual factors: time, and the particular characteristics of that person (Table 6.2).

The importance of the physical context is obvious, but its scope needs emphasis. It can and should include such factors as clothing, orthoses and prostheses, all equipment, the built environment, geography, and most importantly the presence of other people as those able to provide practical support with activities. In other words the physical context includes other people not in terms of their social interactions, but in terms of their importance in enabling a patient’s interaction with the physical environment.

The social environment is also very broad in scope. It starts with the availability of other people for social interactions, whether face to face, or using phone or email. However the social context also encompasses the beliefs and expectations of other people, as part of the local culture, and the legal and social framework of society, which includes any financial assistance available.

The third contextual factor, recognized but not classified within the actual WHO–ICF model is that of the person. This concept encompasses the person’s beliefs, expectations, and other personality characteristics. Naturally some aspects of personal context will be determined by direct past experience, whereas other aspects will be determined by genetic and social or cultural factors.

Time is the final contextual factor, which is recognized explicitly in paediatric models of illness but less often in other models. This temporal context refers primarily to two items: the person’s stage in their life; and the stage within their illness. Many important factors will be associated with the person’s time in their life and illness, such as expectations, personal and social resources available, intrinsic abilities, and likely prognosis. All of these will influence the direction and scope of rehabilitation.

6.2.5 The person—choice and quality of life

Finally any model of illness must ultimately recognize that each person will have their own opinions and make their own judgements on what is important to them, and then will make their own choices concerning, inter alia, health treatments offered. In other words, people exercise their free-will. Their choices naturally will be constrained by many of the other items already discussed, and may be influenced by many of the items already discussed but ultimately a person makes choices between available alternatives.

Quality of life must be included in any complete model of illness. The exact nature and definition of quality of life is difficult to agree, and measurement is fraught with difficulty. However it is probably best conceived of as the person’s own judgement concerning their situation; each person will attach different degrees of importance to different aspects of their situation. One person’s trivial problem, such as unsightly varicose veins, may dominate another’s life.

6.2.6 Rehabilitation—structure, process, and outcome

Rehabilitation may be defined as ‘a problem-solving process that requires a multi-professional team which focuses on the person’s activities and has the goals of optimising social participation and minimizing distress of both the person, and of others’. This definition will be enlarged upon, considering the process of rehabilitation, the goals, expected outcomes, of rehabilitation and the structures or resources needed to succeed in these goals.

Process

People present to rehabilitation with particular problems, usually at the level of activities or participation. Occasionally people may be presented by others because they pose difficulties, although they may not themselves recognize that difficulties exist. The role of a rehabilitation service is to resolve the patient’s problems, as far as is possible within any constraints imposed by the underlying disease and the resources available. The problem-solving process employed is no different to that used in any situation involving traditional biomedical care and health service management (see Fig. 6.1).

Two features characterize rehabilitation: the vocabulary, and the focus of attention. Generally in rehabilitation the process of establishing the situation is referred to as assessment whereas in neurology it is called diagnosis. The words describing interventions in rehabilitation are poorly defined—therapy, treatment, care, equipment etc.—in contrast to the specific terms used to describe many medical interventions such as ’sodium valproate 1000 mg daily’, or ‘intra-muscular botulinum toxin’.

More importantly the focus of attention, and hence the potential scope of any actions needed also differs. Neurology is primarily concerned with establishing the presence of an underlying pathology and its nature, and then with removing it or minimizing its effects. Rehabilitation has a much broader scope, being closely concerned with a patient’s ability to participate in society socially, thus requiring the ability to undertake many activities and the ability to adapt to change. Although the range of potential investigations and treatments in neurology is large, the range of both in rehabilitation is even wider.

Thus rehabilitation starts with collecting data from the patient and others to establish:

  • The problems, both apparent and unacknowledged;

  • The causes of, and factors influencing each problem;

  • Any factors that help establish prognosis of, and the interventions needed for, each problem; and

  • The wishes and expectations of all interested parties.

The process of assessment is effective (Wade 1998) but only in the context of a treating team. Unsurprisingly, isolated assessment is not in itself effective.

Then goals are set. These need to include both long-term and short-term goals. Long-term goals are usually at the level of participation and the associated extended activities of daily living, such as community skills or work. Whereas short-term goals are usually at the level of impairment and basic activities. The characteristics of successful goal setting have been established, primarily in fields outside health (Locke and Latham 2002). Goals are more likely to lead to change in patients if:

  • They are in a domain that the patient agrees is of importance;

  • Goals are challenging;

  • Goals are specific, and can be measured in some way to establish successful change;

  • Feedback on progress is given;

  • The goal-setting process includes or establishes the links between short- and long-term goals; and

  • Patients hold a high belief in their own control and ability; their self-efficacy.

The effectiveness of goal setting both in general (Locke and Latham 2002) and in rehabilitation has also been reviewed (Hurn et al. 2006; Levack et al. 2006), and there is sufficient evidence to encourage its use. Additional benefits might include:

  • Improved team working, with coordination and ensuring that all problems are covered;

  • Reduced patient depression and distress with increased patient motivation and self-efficacy;

  • Incorporation of a personalized outcome measure to report back to funding agencies; goal attainment scaling (Rockwood et al. 1997).

The third stage of the rehabilitation process is to intervene or treat. The range of potential interventions is very large, covering all domains of the illness model. The difficulty of classifying treatments has been discussed (Wade 2005). The evidence in favour of many interventions is quite strong, but only a minority of all possible interventions have been subjected to formal trials. While it would be possible to investigate almost any treatment in some way, it should be acknowledged that the benefits of some interventions, such as providing a wheelchair to someone with paraplegia, are so obvious as to not require formal research. Others are for such rare but specific situations that research is practically impossible.

The final phase of rehabilitation is to re-assess the situation, comparing achievement against goals set and checking that all problems have been considered so that further necessary goals can be set. One weakness in many rehabilitation services is that patients are not discharged. Failure to discharge may waste resources, but more importantly it will maintain unrealistic and unachievable expectations in the patient and others. One common reason for failure to discharge is the absence of sufficient long-term support services and social opportunities in the community. Not infrequently attendance for rehabilitation is not infrequently the social highlight of a patient’s life, and the only break for the family. However rehabilitation services should identify the needs for support and social activities, and work hard to ensure that they are met; they should not waste their resource and maintain unrealistic hope in others.

Goals and outcome

Rehabilitation is one part of the Health Care System, and the overall goal of most health care services is to improve a person’s quality of life. Quality of life is a nebulous concept, difficult to define and measure, and must be judged ultimately by the patient. It seems to incorporate mood and emotional state, the autonomy to make choices, and freedom from pain and distress. In rehabilitation the overarching, global goals are to:

  • Optimize a person’s social participation, considering the person’s wishes;

  • Minimize the person’s distress, both emotionally and bodily, for instance pain;

  • Minimize the somatic and emotional stress as upon, and distress caused to, family and other importantly involved participants. This last goal may often conflict with the first.

The two main subsidiary goals are:

  • Helping the patient to have the maximum behavioural repertoire that is both achievable in the circumstances, and consistent with his or her goals; and

  • Giving the patient as much ability to adapt and respond to changes as possible.

Structures

The goals aimed for, and the processes needed to achieve those goals, have major implications for the structures. Specifically the processes cover multiple domains and extend over a long time. Often one process will be contingent upon another, and sometimes only coordinated actions can have any effect. Consequently rehabilitation is crucially dependent upon team work. The main resource needed is a multi-disciplinary team that includes:

  • All professions to provide the expertise needed to resolve most of the problems posed by the patients likely to be encountered, with the ability to provide most of the interventions required;

  • Sufficient staff to provide both the care and support needed whilst the patient is being assessed and treated;

  • Access to all the equipment needed to undertake full diagnostic assessment; and

  • Access directly or indirectly to all equipment needed by the patient to achieve or maintain their optimal level of activities.

6.2.7 The utility of this analysis

The analysis provided by the WHO–ICF model is only important if it has a beneficial effect upon clinical practice, directly or indirectly. There are various lines of evidence concerning its possible utility.

First, it has been used as a basis for several UK National Guidelines agreed by consensus; although the author was frequently a member of such working parties this model was agreed by others as a helpful way to structure recommendations. Second the model is widely and increasingly used in research, especially but not exclusively in rehabilitation research. Third, the model can be used to understand various common problems, so as to see them in a new light that might eventually lead to better management processes. Table 6.3 illustrates some to the lessons that the models teach. The model also allows a classification for all levels of intervention (Table 6.4).

Table 6.3 Lessons from World Health Organisation’s International Classification of Functioning model

Observation

Comment

Time

The time frames are different at each level

Change and management at levels of pathology and impairment are generally quick (hours/days), but change and management at levels of activities and participation are generally slow (weeks/months/years)

Systems managing different levels should be separated; people with rehabilitation needs are inappropriately placed in an environment focused on disease management

Health services

Hospitals and health services focus on pathology

Hospitals are environmentally unsupportive of disability; hospital systems are procedurally set in short time frames (hours/days); health service data is usually predicated on a definite diagnosis which is often not available, certainly at presentation

Dependence at the level of disability determines main cost of long-term ill health

Supportive care provided is main resource used in health care, even in acute phase. The resources used are not related reliably to pathological diagnosis.

Payment for services should not be related to diagnosis; they should relate to dependence and to rehabilitation treatments needed.

Disability and context

Disability refers not only to ‘quantity’ (e.g. dependence or otherwise) but also to quality

For some people it matters more how normally they act than whether they can undertake an activity; the social implications of altered behaviour may restrict that behaviour; measures rarely take account of the quality of task performance

Outcome measures should therefore consider the perspective of the person in addition to that of others

Disability is strongly influenced by the goals of the patient (the personal context)

All behaviour is goal-directed, and so disability cannot be considered ‘context free’; many factors including financial considerations may determine the activities undertaken by a patient.

Patient-centred treatment requires a good understanding of the patient’s goals, interests, and concerns

Observed disability also depends upon the physical and social context

How someone behaves is inevitably affected by environmental factors and may be significantly constrained by the environment. The ‘environment’ includes the capabilities, wishes, and expectations of relevant others

Interpretation of outcome requires information about context

Relationship between levels

The nature and extent of the relationships between levels are weak

For example patients may have ‘silent’ pathology (i.e. disease without symptoms or signs). This gives scope for rehabilitation. It also implies that measures of the extent of pathology are poorly related to the extent of disability in many cases

Causal relationships may extend in any direction, ‘up’ or ‘down’ the hierarchy

The relationships are not all one way from pathology through to handicap. Changes in behaviour may ‘cause’ pathology. For example, electively not moving a shoulder may lead to the pathology of adhesive capsulitis (frozen shoulder)

Not all illness need start from pathology

A systems analysis of the model would predict that illness may start at any level, and interact down the systems as well as up the systems. Abnormal beliefs (part of personal context) may cause as much disability as pathology (abnormal organ structure or function)

Psychologically determined illness is common in neurological practice, and this model both predicts it and may help understand and manage it

Prognosis depends upon pathology (if present)

The prognostic field for an individual patient is usually determined by the specific disease, but the specific prognosis within that field for a particular patient is usually related to impairments and other factors

Measures should only encompass items from one level

It is invalid to add scores from items or measures covering domains from different levels

Measurement and normality

‘Normal’ becomes much less easy to define, and becomes increasingly personal

Pathology

Structure or function measured against any human, with some allowance for age and gender

Impairment

Structure or function measured against humans matched for age, gender, and other demographic characteristics.

Activities

Behavioural performance and repertoire measured against:

  • Socially normative behaviour for some activities

  • Previous personal behaviour for some activities

  • Desired behaviour for some activities

  • Expected (e.g. by family) behaviour for some activities

Observation

Comment

Participation

Social role performance and social position measured against:

  • Socially valued and expected roles for whole society

  • Culturally valued and expected roles for local, personal society

  • Personally valued and expected roles

Miscellaneous

The terminology used all assumes abnormality

There are currently no good words for the opposite of impairment, disability, or handicap.

The ‘new’ terminology of limitations on activities and participation overcomes some of this, though there is still no obvious opposite to impairment.

Interventions may occur at many points

While removal of the prime cause of an illness is the ideal, and this prime cause will often be at the level of pathology, interventions at other points are often also effective, especially when there is no pathology or when pathology cannot be altered

Table 6.4 Interventions at different levels within the World Health Organisation’s International Classification of Functioning model

Domain

Comment

Example

Patient

Pathology

Often not reversible or curable, but reduction or control may be important.

Interferon-beta for multiple sclerosis

Impairment

May be reduced directly, or indirectly through activities, or controlled

Botulinum toxin for local spasticity; exercise to increase fitness; analgesia, L-Dopa for Parkinson’s Disease

Activities

May be taught (usually new ways of achieving goals, or use of equipment) or practiced

Treadmill gait retraining, using an environmental control system, writing using non-dominant hand

Participation

Cannot give someone new roles, but may suggest possible roles and should facilitate development of new roles (and possibly giving up old roles)

Suggest that a manual worker retrain to be an office clerk, and put in touch with appropriate training course.

Contexts

Choice or free will

Can be altered through giving information, advice etc.

May be altered through more structured behaviour modification programme (structured responses to wanted and unwanted behaviours)

Explain health advantages of work over being ‘off sick’; inform about expectation of health system.

Ignore unwanted behaviour but respond to wanted behaviour

Personal

Changing expectations, beliefs and attitudes, and agreeing goals all may help motivation (i.e. willingness to participate in process)

Cognitive behavioural therapy is prime example of therapy aimed at personal context

Physical

Refers to all aspects of physical environment, including adaptation of clothes, altered or new equipment, housing adaptations, and the presence of people as providers of hands-on care or supervision

Provision of orthosis, prostheses, wheelchairs, and adapted cutlery. Also teaching carers how to assist, structuring environment

Social

Altering the social context is usually a slow process as involves changing attitudes, expectations, and beliefs of those interacting with the person

Altering legal framework. Changing population expectations.

Temporal

Providing a predictable structure to day, and ensuring that the person has opportunities to undertake and/or participate in activities throughout the day may be important

Arranging a stable, predictable care routine

6.3 Evidence supporting rehabilitation

‘What is the evidence supporting rehabilitation?’ is still asked quite frequently. This question can be interpreted in different ways. The first group of questions relate to the process of rehabilitation. The next group relate primarily to specific interventions, although these are difficult to define and have been likened to Russian dolls, or black boxes. Whatever analogy is preferred, there is agreement that interventions needed to be considered hierarchically. The third group of questions relate to organization or management. This section considers the question from three perspectives:

  • The process of rehabilitation;

  • Strategies employed to guide interventions, sometimes referred to as ‘approaches’ to rehabilitation; and

  • Specific interventions used within the practice of neurological rehabilitation.

The fourth perspective of the best way to organize and deliver rehabilitation services will not be discussed in detail. Suffice it to say that the evidence suggests that organization and expertise are essential for rehabilitation to be effective, but that the site of delivery is less important, be it home, specialist hospital, general hospital, or community hospital, or out-patient department. The location of rehabilitation probably does not affect total resource use, in other words rehabilitation costs no more or less wherever it is delivered, with savings in some costs being countered by increases in other costs.

6.3.1 Is the rehabilitation process effective?

One hundred years ago people with complete spinal cord injury had a very short life expectancy, but now it is near normal. This dramatic change arises purely from rehabilitation; it is not due to any specific curative treatment for the underlying damage to the spinal cord. No randomized controlled studies were undertaken to achieve this huge advance, which is universally recognized. More recently the evidence in favour of stroke rehabilitation taking place in stroke units has been shown to be overwhelming (SUTC 2001). Stroke rehabilitation reduces mortality by about 20 per cent, which any pharmaceutical firm would envy, and also reduces morbidity or disability at no extra cost. The process of rehabilitation has been shown to be effective in many other groups of patients such as multiple sclerosis (NICE 2003), moderate head injury (Turner-Stokes 2003), and motor neurone disease (Van den Berg et al. 2005). It should not be surprising that the process of rehabilitation is effective. It is simply a standard problem-solving approach that requires specialist knowledge and skills, as for all other medical specialities and indeed health service managers. There is also some evidence available concerning the different stages of the rehabilitation process:

  • Assessment, which is the equivalent of diagnosis in the medical sphere, is beneficial only if integrated into an overall programme of rehabilitation; isolated identification of problems does not help. However relatively little evidence exists to guide one in the choice of data collection tools or assessment protocols;

  • The evidence for goal setting in general is strong, but there is much less evidence relating to goal setting within the field of neurological rehabilitation (Section 6.2.6); and

  • There is also some evidence suggesting that evaluating interventions in rehabilitation might be achieved using goal attainment scaling (Hurn et al. 2006). Apart from this, there is little specific evidence to guide the process of evaluating progress. For example we do not know what proportion of all goals set need to be achieved for significant benefit to accrue.

There is one component of the rehabilitation process where there is no evidence to guide or support clinical practice. That is in the provision of care and support. In other words we do not know the most cost-effective way of providing input to maintain a patient’s safety and well-being.

The effectiveness of interventions can be considered in two ways. The first is very specific and focused and asks whether a particular treatment improves outcome, this is discussed later. The second is more general, and possibly more useful because it asks whether using a particular treatment strategy is effective. Evidence concerning the first may only apply to a very specific situation, whereas evidence concerning strategies is more likely to apply to a broader range of situations and patients.

6.3.2 What strategies are most effective?

This section discusses matters that may also be termed treatment ‘approaches’ or ‘techniques’. For example, is the ‘Bobath’ approach to the management of upper motor neurone weakness better than the ‘Motor Relearning Programme’ approach, or is treatment focused on optimizing activities better than treatment focused on reducing losses or impairments? The difficulty in answering this question is that there is little agreement on what strategies exist. Furthermore the description of most strategies is very limited, and prone to change over time. At present the evidence suggests that to be effective, rehabilitation requires practice of activities in the most relevant environment possible, rather than undertaking exercises aimed at changing impairments. This is sometimes referred to as task-specific training.

6.3.3 Evidence supporting specific interventions

Neurological rehabilitation faces two problems when considering specific interventions and whether they are effective. The first may seem trivial, but it is important. Many effective interventions are drugs that may be prescribed by any doctor. This leads to debate as to whether the benefits of that treatment can be attributed to ‘rehabilitation’ rather than ‘neurology’ or ‘general practice’. This does not necessarily matter, but it may be that the drug is only effective if used by someone with adequate expertise in the context of an overall rehabilitation package. Two examples of treating spasticity illustrate this:

Botulinum toxin injections undoubtedly reduce spasticity, but the extent of benefit probably depends upon (a) selection of the appropriate patients, muscles, and doses and (b) concomitant therapy to capitalize upon the benefit obtained by reduction in the spasticity (Francis et al. 2004). As an intervention it is probably more effective when used by a rehabilitation specialist in the context of a multi-professional rehabilitation team.

Baclofen also probably controls spasticity, although the evidence is weak (Shakespeare et al. 2003). It is common experience that many patients are either not helped with Baclofen, or stop it due to side-effects. Furthermore some patients taking it do not have spasticity, instead having dystonia or choreo-athetoid movements for instance. Unfortunately these practices may arise from limited knowledge and experience. It is best to start baclofen, and indeed other anti-spasticity drugs, at a low dose of 5 mg and to increase by small increments of 5–10 mg at relatively long intervals of 7–14 days, timing the dose if necessary to cover the most troublesome period such as night time spasms. Unfortunately many doctors will commence dosage at 10 mg twice daily, increasing rapidly to 10 mg four times daily, and then stopping when the patient has excessive drowsiness and sees little benefit.

The second problem is also important, but difficult to resolve: how to describe most rehabilitation interventions. Drugs are relatively easy to specify in pharmacological terms, though it is important to consider other factors related to the use and effectiveness of drugs such as their mode of presentation, colour of tablets, or the beliefs and expectations of the recipients (Moerman 2002). Furthermore the interaction between different drugs being taken by the patient, and between drugs and other non-pharmacological interventions must be considered. It is also relatively easy to define pieces of equipment that may be given to, or used by patients, but then it becomes important to consider the characteristics of the patient, what training is offered, and contextual factors such as other pieces of equipment.

It is very difficult to classify and define most specific rehabilitation interventions, not least because each intervention depends upon prior assessment and goal setting and continued monitoring of progress. In other words the intervention is always an integral part of a broader process. The attempts made to describe and classify rehabilitation treatments generally agree that interventions form a hierarchy ranging from the general to the specific. Systematic approaches have been proposed, but at present no system has even been tested or used to any extent.

6.4 Specific diseases

The discussion so far has emphasized the general approach of rehabilitation in considering how to resolve someone’s problems related to their activity limitation. Most of these principles, and much of the evidence can apply to any disease. Consequently this section is relatively short, and will only consider a few specific diseases.

In the UK a Government document has been recently published entitled ‘the National Service Framework for Long Term Conditions’ (DH 2005) which outlines some valuable principles relating to the rehabilitation of people with neurological conditions. This document recognizes that there are probably four different categories of neurological condition:

  • acute onset disability, with a phase of improvement followed by relative stability (Section 6.4.2);

  • fluctuating and or unpredictable disability, often with some progression (Section 6.4.3);

  • progressive disability, at a rate varying between individuals but relatively predictable within an individual (Section 6.4.4);

  • stable conditions where there may be some change as people age or as circumstances change. This may include people who have had an acute onset disability and stabilized with some residual disability (Section 6.4.5).

Although there may be some diseases that do not fit easily within these four categories, they provide a useful way to categorize rehabilitation and will be adopted here.

6.4.1 The role of the doctor

Before considering each disease, the role of the neurologist as a member of a rehabilitation team will be discussed. The extent to which a neurologist fulfils these roles will depend upon the expertise of any other medical person in the team, and the particular interests of the neurologist.

One central role, which only the doctor can fulfil, is the diagnosis and disease-specific management of any underlying disease. While this may appear simple, particularly later after onset, two points are worth noting. First, most diagnoses retain an element of uncertainty. It is essential to remain alert throughout a patient’s involvement with a rehabilitation service to the possibility that the original diagnosis was inaccurate.

Second, a patient may develop new symptoms that require diagnosis. The doctor is needed to evaluate the meaning of any new symptoms, to order investigations if needed, and to initiate and monitor disease-specific treatment if necessary. In practice the main role of the doctor is usually to reassure the patient and others that in fact the new symptoms are of no great significance.

Third, in rehabilitation it is essential to know the prognosis of the underlying disease. Whilst in principle this may be known to other team members, who are able to look it up, in practice it is the neurologist who is likely to have the best knowledge concerning prognosis.

A fourth role for a doctor is that of symptom management using drugs or surgery. There are many symptoms or impairments that can be ameliorated using appropriate medication. Particular skill is needed in managing neurological symptoms in someone with long-term disability.

The main principles to observe are:

  • Always consider whether medication can be reduced or withdrawn. It is probably more common for patients to be on unnecessary medication than it is for the patient not to be receiving beneficial medication;

  • To start any new medication at a low dose, and subsequently increase gradually. Patients with long-term neurological disease are often more sensitive to the side-effects of medication;

  • Avoid changing more than one medication at one time; and

  • If at all possible, use one medication to control several problems. For example amitriptyline is useful to control pain, to reduce bladder urgency, to help sleep, to reduce depression, to reduce salivation, and in other ways such as reducing anxiety.

Although in many respects the neurologist will be an equal member of the rehabilitation team, in practice it is usually the doctor who has the most experience, and will be most suited to make difficult decisions, and to chair difficult case conferences.

6.4.2 Acute onset disability: stroke and injury to thebrain and spinal cord

There are many neurological conditions that start suddenly, reaching their peak within minutes and hours or a few days, and that often leave the patient with a long-term impairment and level of disability. Examples include stroke, spinal cord injury, traumatic brain injury, and most infective central nervous system disorders, Guillain–Barré syndrome and hypoxic brain injury.

There are some general principles that apply to most of these conditions. From the perspective of those involved in rehabilitation, the diagnosis generally is made elsewhere. However it is still important for the rehabilitation team to have access to diagnostic expertise. Occasionally the diagnosis made elsewhere may be wrong. More importantly it is necessary to diagnose any change that may occur in the neurological state: does it reflect recurrence, or is it due to a new condition, or is it an expected part of the natural history? The neurological rehabilitation team will also be particularly interested in the detailed consequences of the specific pathology. They will need to know what impairments are likely, and what impairments are unlikely so that they can undertake an efficient screen of impairments on arrival.

The likely prognosis is the second important feature that will need to be known by the rehabilitation team. Although prognostic factors are not known in detail for all conditions, it is nonetheless likely that a reasonably accurate prognosis can be made by the time someone enters the rehabilitation service. Generally prognosis relates initially to the extent of impairment, but after a few weeks the level of disability in one area is often the best predictor of disability at a later time.

For most of these conditions both the patient and the rehabilitation team can be reassured that any gains achieved will be retained, at least for some years.

Stroke

Stroke is perhaps the most well-researched neurological condition in terms of rehabilitation. There are many systematic reviews, and well-researched and evidence-based guidelines concerning stroke rehabilitation. Only a brief outline will be given here, and readers are strongly recommended to look at a national guideline either for their country, or the one published in the UK (ICSWP 2004).

The main principles underlying stroke rehabilitation are as follows:

  • The patient should be under the care of a specialist stroke rehabilitation unit whilst in hospital, and a specialist stroke rehabilitation service when back in the community. The evidence supporting these statements is overwhelming.

  • Therapy should be task oriented. In other words current evidence suggests that practicing an activity is the best way to improve at that activity.

  • The patient should be set both short- and long-term goals, and those goals should be relatively challenging and set at the level of activities or social participation.

The stroke rehabilitation team will need a doctor with disease specific knowledge and skills. The diagnosis needs to be made as accurately as possible. Furthermore any new events need to be diagnosed in terms of their underlying pathological cause. The diagnosis of stroke is covered elsewhere. Medical treatments need to be initiated and monitored, both for the stroke itself and also importantly for any underlying specific causes. This role will often fall to the neurologist. The third important role for the neurologist is to determine the likely prognosis. Much research has been undertaken into the prognosis after stroke, both in terms of survival and in terms of functional recovery. The best single prognostic indicator for stroke is probably the presence of urinary incontinence in the first few days after the stroke. Patients who are incontinent are more likely to die, are less likely to walk independently, and are more likely to be transferred to a long-term residential setting after leaving hospital. Considering most other measures, the outcome at some future point is usually determined to the greatest extent by the measurement at the earlier point. The best way to predict the future score on a measure is to know the current score on that measure.

Head injury

Traumatic brain injury, which is probably a more accurate term than head injury, is another acute onset disabling neurological condition. The term unfortunately covers an extreme range of clinical severity from the trivial knock on the head which leaves someone dazed for a few minutes and possibly with a headache for a few days through to the patient who is left in a permanent vegetative state for 40 years. This makes it difficult to describe rehabilitation, as the needs vary so greatly. The best single measure of the severity of head injury is the period of post traumatic amnesia; this is the time that elapses from injury to the return of continuous day-to-day memory. Generally this can be determined clinically, by asking the patient and checking against other available contemporaneous information. It is important to be aware that people can have ‘islands of memory’ within a period of post-traumatic amnesia.

Neurologists should be wary about statements concerning either prognosis or severity. On an individual basis, a prognosis is extremely difficult to provide and it is wise to restrict oneself to outlining a range of potential outcomes. Some people with relatively trivial injuries remain off work indefinitely, whereas other people with apparently severe head injuries, who have been in coma over 24 h and suffered post-traumatic amnesia for over 2 weeks) may return to high-level jobs within 6 months. The word severity has two meanings in the context of head injury. It might refer to the prognosis at the time, for example someone with an extradural haematoma might have a bad prognosis, if not treated. Or it might refer to the actual situation at a particular time. Unfortunately, in a medico-legal context, these two meanings are frequently mixed. For example if someone has returned to work after a head injury involving post-traumatic amnesia of 2–3 weeks, it is misleading to describe the head injury as ‘severe’ simply because that label has been promulgated or because others with a similar duration of post-traumatic amnesia remain off work.

Neurologists are most likely to see people who have had relatively minor head injuries with a period of post-traumatic amnesia ranging from 0 to 24 h, with the patient complaining of persisting ‘post-concussional’ symptoms (Section 25.6.1). The evidence suggests that whilst post-concussion symptoms may be related to brain damage for the first 3 months, after that, emotional and other psychological factors assume much greater importance. It is worth noting that formal neuropsychological testing cannot determine the aetiology of such symptoms; the best predictor of neuropsychological performance is the existence of a claim (Binder and Rohling 1996). The best rehabilitation is to offer the patient information, advice, and support as soon as possible after their injury, encouraging a reasonably rapid but not fast return to work. Unfortunately it is not possible to quantify in any detail the speed of return to work.

The other group of patients that neurologists are likely to see are those with much more severe head injury. They may present with refractory epilepsy (Sections 25.5.3 and 31.8.2), or in a vegetative state (Section 33.6). Also the neurologist may be asked to advise on difficult behaviour, or sometimes on specific impairments that are difficult to manage. There is no evidence to guide specific management of aggressive behaviour (Fleminger et al. 2006).

Spinal cord injury

In most health care systems acute spinal cord injury (Section 28.4.3) is managed by a specialist service, and in general neurologists will not come into contact with patients who have acute spinal cord injury. The neurological diagnosis is usually obvious, and it is also usually obvious whether or not the spinal cord is completely transacted from the outset. Rehabilitation has several general goals:

  • It should aim to minimize the risk of all preventable complications. Although initially this is the responsibility of the health care service, the primary goal of the rehabilitation service is to ensure that the patient is fully aware of how to preserve health and well-being;

  • The rehabilitation service needs to teach the patient how to manage in the presence of their impairments and it needs to ensure that all required adaptations and equipment are identified and provided. In other words it needs to ensure a suitable physical context, and to ensure that the patient can use this context;

  • It may need to teach others how to provide additional support to the patient if necessary. In general patients with lesions below the cervical level of the spinal cord can live fully independently, whereas patients with cervical spinal-cord lesions will need assistance to a greater or lesser extent.

  • In patients with spinal cord injury particular attention needs to be paid to the management of excretion from bowels and bladder, sexual function, and skincare.

  • Medical recognition and management of autonomic dysreflexia is important (Section 28.3.7). The primary concern is with the increased blood pressure. The primary management is to identify and treat the precipitating factor, usually bladder stimulation treatable by catheter drainage, and to monitor and reduce blood pressure using, for example, immediate-release nifedipine (Blackmer 2004).

6.4.3 Fluctuant and unpredictable disease: multiple sclerosis

Diseases that fluctuate unpredictably can be the most difficult to manage. Both the patient and the rehabilitation team have to act, at one and the same time, as if there is going to be some stability or improvement whilst also contemplating that matters could get worse in the near future: to ‘hope for the best and plan for the worst’. The neurologist has an important role to play. Often there is diagnostic uncertainty, either about the underlying disease or about the specific cause of change. Consequently the neurologist must be prepared to review the diagnosis at unpredictable intervals when matters change suddenly. However the neurologist probably cannot play a definitive role in terms of prognosis as this, by definition, is unknown.

Multiple sclerosis

Multiple sclerosis is the archetypal unpredictable disease (Section 37.5.4). Management is extremely difficult because multiple sclerosis can cause such a wide variety of impairments, of which each patient has their own unique combination. As with stroke, there are national clinical guidelines available within the UK (NICE 2003), and these review evidence in relation to the organization of rehabilitation, and also in relation to each specific common impairment. The neurologist has a vital role in the rehabilitation of individuals who have multiple sclerosis.

A proportion of people presenting to rehabilitation services with a diagnostic label of multiple sclerosis do not in fact have the disease. Most commonly these individuals have non-organic disability, a psychologically determined disorder (Section 4.2.4). More rarely they have an alternative neurological diagnosis. Pursuing an active course of rehabilitation in an individual with a psychologically determined illness may be to their disadvantage because there is no evidence that any particular type of rehabilitation helps, and sharing an environment with other disabled people may reinforce their behaviour and possibly raise unrealistic expectations in family members. The act of incorporating such patients in a service that is focused upon people who do have an underlying disease will reinforce their own belief that they also have a serious underlying disease, whatever one may have told them beforehand. In other patients one may not be alert to likely problems, or one may work on false assumptions about prognosis.

Consequently it is vital that the neurological diagnosis is reconsidered whenever a patient is newly referred to a rehabilitation service, and this requires a doctor with good neurological training.

It is also important, although sometimes difficult, to distinguish between increased dependency resulting from the general effects of an incidental infection, and an increase in dependence related to disease relapse. In patients who worsen with infection, one can expect a reasonably full recovery in a relatively short time after proper treatment of the infection, whereas patients who have relapsed usually recover more slowly and incompletely. However rehabilitation has an important role to play in addition to high-dose steroids (Craig et al. 2003) (Section 37.5.9).

Neurologists also have an increasingly important long-term role in treatment. More and more patients are likely to be on disease-modifying drugs (Section 37.5.8), and it is important to have someone with expertise in such drugs as a member of, or advising, the rehabilitation team. An increasing number of drugs can be used to modify one or more of the common impairments, and again it is important for a doctor who is familiar with these impairments, and the drugs used to modify them.

6.4.4 Progressive disorders: neuromuscular disorders

Many neuromuscular disorders are progressive at a faster or slower rate. Motor neurone disease (Section 23.2.1) is one relatively commonly encountered example illustrating some general principles applying to the rehabilitation of most patients with progressive disorders.

First, patients often adapt slowly and progressively to their slow and progressive impairment. Provided they have at least reasonable cognition, then they are able to deduce, either consciously or otherwise, the best way to manage in their situation. Rehabilitation services often have little to offer; sometimes they can advise on how to obtain specific pieces of equipment, or other adaptations. More rarely they can provide practical information about equipment or adaptations that the patient has not considered or found out about themselves.

It is always sensible to inform patients with progressive disorders about special-interest patient support groups. Such groups often have a higher level of expertise than most general rehabilitation services. Furthermore, with the Internet, patients will often discover information for themselves.

Patients often worry that exercise will in some way exacerbate their condition. They should be specifically reassured that exercise and keeping fit is not known to be harmful and there is evidence in some conditions that it is positively beneficial. Therefore the neurologist or neurological rehabilitation service has an important role to play in informing and reassuring the patient, to alter their beliefs and expectations.

Conversely patients can often become remarkably dependent after a trivial incident that happens render them bedbound, such as an infective episode or a fracture. If they lose skills that they have retained, through a lack of practice, it can become extremely difficult to regain the previous level of independence. Therefore the rehabilitation service may have an important role to play keeping the patient independent through another illness, or helping the patient to reclaim a previous level of independence if this seems possible.

In many progressive disorders it is quite possible to predict how the patient’s situation will change, and to take actions and make decisions that will lessen the consequences of these changes. For example somebody with hereditary spastic paraparesis is likely to have increasing difficulty with stairs, and consequently would be well advised to consider moving to a house on one floor if moving house, and to consider buying an automatic car that can be adapted for arm controls.

Motor neurone disease

Motor neurone disease (Section 23.2) straddles many boundaries. In some patients the rate of progress is relatively slow, and the principles outlined above apply. In other patients the rate of progress is too fast for patients to learn how to adapt. Also in motor neurone disease the threat of death is present from the outset, and many patients are aware of this. Consequently it may be important to involve specialist palliative care services, and it is always important to discuss openly how close death might be and to support the patient emotionally and practically. Otherwise the principles are the same and can be applied successfully to improve quality of life (Van den Berg et al. 2005).

6.4.5 Stable disease present from childhood: cerebral palsy

Diseases that present at or shortly after birth, or those acquired during childhood pose another set of problems. Their early management will usually be the responsibility of a paediatrician or paediatric neurologist, and for many conditions there will be a prolonged phase of trying to refine the diagnosis. Rehabilitation during childhood has to be undertaken in close liaison with the educational service. Fortunately the close conceptual link between rehabilitation and education usually makes that liaison easy. Rehabilitation in childhood also has to take into account that the central nervous system is maturing, with the consequence that the patient will be gaining extra abilities as part of their normal process of development. Following acute onset conditions, this often means that children have a particularly good prognosis. However in the face of widespread damage before birth, or when the pathology is progressive, significant achievement is often difficult.

Paediatric neurological rehabilitation is outside the scope of this chapter, and is generally well managed by specialist children’s services. However there is one extremely important, yet often poorly managed feature—the handover to adult services. Paediatric rehabilitation services are usually well resourced, and provide a flexible and holistic service whereas, in many countries, the standards of service available to young adults are much lower.

Cerebral palsy

Although cerebral palsy (Section 9.5) is a common condition, and although many children with cerebral palsy survive into adulthood, there is remarkably little research or published evidence concerning its natural history or its rehabilitation.

6.5 Some specific situations

Neurological rehabilitation sits in a hinterland, requiring some knowledge of individual disease and specific treatments while also having an understanding of general aspects of functioning in society, and having the skills to increase activities whatever the cause of their limitation. Neurologists are likely to be involved with or asked about the management of some impairments. The most likely is spasticity.

6.5.1 Spasticity

Spasticity is an extremely common and important impairment, being seen in a very large number of neurological conditions. Before discussing its management, it is worth emphasizing that spasticity refers to a syndrome that includes one or more of the following phenomena:

  • increased resistance to passive movement around a joint due to stiffness in the muscle;

  • hyperreflexia, consisting of an enhanced reflex response to muscle stretch;

  • spasms, consisting of involuntary muscle contractions which cause movement and are often painful;

  • pain or discomfort in the muscle;

  • adoption or maintenance of a particular posture, especially on effort;

  • clumsiness, or reduction of fine motor control; and

  • reduced voluntary muscle strength.

Recognition of the complex nature of spasticity is important when considering its management. When assessing someone with spasticity it is important to consider which aspects of the syndrome need to be treated, if any. The evidence available to guide management of patients with spasticity is very weak even for the commonly used drugs. Intra-muscular botulinum toxin injection is probably the best supported intervention. For almost all others the benefit is either not detectable or not present, or is associated with significant side effects. Nonetheless clinical experience suggests that a structured approach such as that recommended in multiple sclerosis (NICE 2003) is beneficial. The approach includes the following options, usually in the following order:

  • doing nothing if the spasticity is not troublesome or if its leg stiffness is used to allow walking;

  • prevention of complications such as contractures through stretching, evidence for which is lacking, and positioning at rest;

  • prevention of spasticity through amelioration of any exacerbating factors such as pain, infection, or anxiety;

  • learning self-control, for instance reduction through relaxation;

  • simple single drugs, such as baclofen or gabapentin;

  • using combinations of drugs;

  • using intra-muscular botulinum toxin in conjunction with rehabilitation therapy. This is usually restricted to focal spasticity;

  • intra-thecal baclofen delivered by an implanted, programmable pump for more general spasticity especially of the legs; and

  • destructive procedures such as tenotomies and phenol injection of nerves.

The main considerations are:

  • always to establish the importance of the problem to the patient who has to take the risks associated with any intervention, and to be prepared to do nothing if the patient has no concern;

  • to recognize that functional benefit is rarely achieved, and that control of unpleasant or painful problems is usually the main goal;

  • to provide a balanced view for each individual patient of the perceived benefits and side-effects; and

  • to make changes slowly.

6.5.2 Assessment of activities

This section on the measurement of disability introduces some short simple sets of information that should be useful to any neurological service confronted by a disabled patient. The process of assessment in rehabilitation is not different from the processes used by doctors focused on establishing and managing a specific disease. One needs to identify and quantify phenomena of relevance using data collection tools or techniques.

The important activities to consider are those of personal independence in daily living such as dressing or using the toilet. There are many data collection tools available. Most doctors in the USA and Australia will be familiar with the Functional Independence Measure, a tool that is widely used and often mandated by funding agencies. However the Functional Independence Measure has many disadvantages—it has to be paid for, it requires specific training, and in principle its completion depends upon several team members. It has not been shown to be any more specific or sensitive than other widely available, shorter, and simpler data collection tools (Hobart et al. 2001). It is widely accepted that its non-motor content is unreliable and of little value.

Consequently it is recommended that neurologists should use the Barthel Activities of Daily Living Index (Collin et al. 1988). Several versions exist, but the simplest and most widely used is that shown in Table 6.5; there is no evidence than others are any better. There are some studies comparing the Barthel Activities of Daily Living Index and the Functional Independence Measure, all of which show no significant difference. There seems little benefit in using other scales as the Barthel Index can be used by anyone, can be completed by telephone or post, and only takes a few minutes to complete.

Table 6.5 The Barthel Activities of Daily Living Index

Day

Month

Year

Bowels

0 = Incontinent of faeces (or is given enemas)

1 = Occasional accident (less than 1x per 24 hours)

2 = Continent

Bladder

0 = Incontinent, or catheterisedcatheterized/convene drain and unable to manage it alone

1 = Occasional accident (maximum 1x per 24 hours)

2 = Continent (for last seven days)

Grooming

0 = Needs help (supervision, prompts, or practical help)

1 = Independent in washing face, doing teeth, shaving or putting on make-up, brushing hair

Toilet use

0 = Dependent, unable to wipe self

1 = Needs help, but can wipe self

2 = Independent in transfers and managing clothes off/on

Feeding

0 = Unable; is fed, has gastrostomy, or feeds self minimally

1 = Needs help cutting food, spreading butter, prompts/supervision etc

2 = Independent with food provided/selected

Transfer

0 = Unable; hoisted and/or unable to sit in wheelchair

1 = Major help; one or two people, much physical effort

2 = Minor help; one person, prompts/supervision or minor physical effort

3 = Independent bed-chair

Mobility

0 = Immobile; unable to get from bedroom to dining area

1 = Wheelchair independent (electric or self-propelled) at least bedroom to dining area

2 = Walks with help of one person (physical, or prompts/supervision) from bedroom to dining area

3 = Independent. May use stick, rollator etc if necessary

Dressing

0 = Dependent

1 = Needs help, but does about half (e.g. top or bottom independently, or minor prompts and/or physical help)

2 = Independent, including shoes, laces, buttons etc.

Stairs

0 = Unable

1 = Needs help, physical or supervision/prompts or carrying equipment

2 = Independent up and down stairs (any means, including stair lift)

Bathing

0 = Dependent

1 = Independent (bath or shower) including getting in and out, washing, and drying hair

TOTAL

Mobility is the activity that most patients wish to regain if it is affected. There are three simple sets of data that may help. The first is the Rivermead Mobility Index (Table 6.6) (Collen et al. 1991; Rossier and Wade 2001) which covers the whole range of mobility and is short, easily used, and has been shown to detect change and differences.

Table 6.6 The Rivermead Mobility Index

Topic and Question

0/1

Comment

Turning over in bed

Do you turn over from your back to your side without help?

Lying to sitting

From lying in bed, do you get up to sit on the edge of the bed on your own?

Sitting balance

Do you sit on the edge of the bed without holding on for 10 seconds?

Sitting to standing

Do you stand up from any chair in less than 15 seconds and stand there for 15 seconds, using hands and/or an aid if necessary?

Standing unsupported Ask to stand

Observe standing for 10 seconds without any aid

Transfer

Do you manage to move from bed to chair and back without any help?

Walking inside (with an aid if necessary)

Do you walk 10 metres, with an aid if necessary, but with no standby help?

Stairs

Do you manage a flight of stairs without help?

Walking outside (even ground)

Do you walk around outside, on pavements, without help?

Walking inside, with no aid

Do you walk 10 metres inside, with no caliper, splint, or other aid (including furniture or walls) without help?

Picking up off floor

Do you manage to walk five metres, pick something up from the floor, and then walk back without help?

Walking outside (uneven ground)

Do you walk over uneven ground (grass, gravel, snow, ice etc) without help?

Bathing

Do you get into/out of a bath or shower and to wash yourself unsupervised and without help?

Up and down four steps

Do you manage to go up and down four steps with no rail, but using an aid if necessary?

Running

Do you run 10 metres without limping in four seconds (fast walk, not limping, is acceptable)?

TOTAL

Ask the patient each question. Observe for question 5. Score 1 for ‘yes’, 0 for ‘no’

Other data worth considering include:

  • number of falls experienced by the person over a defined time. Falls are dangerous and concern the patient, but are rarely recorded in medical notes;

  • time in seconds taken to walk 10 m using whatever aid is wanted. This is short and simple, and again there is strong evidence concerning its reliability and sensitivity (Rossier and Wade 2001); and

  • distance walked in 2 min, as a measure of endurance (Rossier and Wade 2001).

Dexterity, the ability to use hands, is of great concern. There are no good questionnaire- based tools that will focus on the affected hand. The set of questions in Table 6.7 cover a range of common problems. Clinically one can ask the patient to quantify a specific activity that they can undertake. Examples include timing how long it takes to move a specific number of small objects such as buttons from one place to another, and counting how many objects can be moved in a defined time. It is best to discuss and identify with the patient a quantifiable activity and to ask them to repeat it as they change treatments.

Table 6.7 Some questions relating to dexterity

Question

Comment

Can you hold and use a knife/fork in your right/left hand?

Can you do up buttons and zips?

Can you hold a pen and write?

Can you use a keyboard?

Can you drink from a cup?

Do you spill fluid from a cup?

Can you clean your teeth (or shave)?

Can you tie shoelaces?

Can you pick up a saucepan safely?

6.6 Conclusion

Neurological rehabilitation has the potential to benefit almost every patient with a long-term neurological condition of any type. This includes dementia (Graff et al. 2006), even though it is a disorder which is both progressive and affects cognition, the two features usually thought to render rehabilitation impossible. The keys to success are:

  • to use a systematic approach to detecting and analysing the patient’s situation;

  • to be flexible and thoughtful in the use of any and all potential treatments;

  • to remember that the person’s overall goals will usually concern social integration, not treatment of symptoms or disease;

  • to work as part of a multi-disciplinary team and across all organizational and geographic boundaries.

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