PART IV. REHABILITATION AND SYMPTOM MANAGEMENT
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Overview of Rehabilitation in Multiple Sclerosis
Francois Bethoux
KEY POINTS FOR CLINICIANS
• Rehabilitation refers to a variety of interventions that aim at preserving or improving function and quality of life.
• In multiple sclerosis (MS), rehabilitation is a component of the comprehensive care approach and is a useful complement to disease-modifying and symptomatic therapies.
• The International Classification of Functioning, Disability, and Health (ICF) is increasingly used as a conceptual framework to describe the consequences of MS, and to assess the results of rehabilitation.
• The nature, intensity, and setting of rehabilitation interventions are determined on the basis of the patient’s needs and on mutually agreed upon goals.
Rehabilitation refers to an array of skilled interventions which aim at optimizing function in patients with a variety of health conditions. The World Health Organization (WHO) defines rehabilitation as “a proactive and goal-oriented activity to restore function and/or to maximize remaining function to bring about the highest possible level of independence, physically, psychologically, socially and economically” (1). Often, rehabilitation is indicated after an acute injury (e.g., brain or spinal cord injury) or health event (e.g., stroke, surgery). The expectation is that the patient will achieve functional gains during the rehabilitation period, then will be returned to his or her usual environment, or to the appropriate setting (assisted living, nursing home), depending on the patient’s ultimate functional status, personal characteristics, and environmental factors (such as physical environment and socioeconomic conditions).
Applying this traditional rehabilitation framework to MS requires an adjustment to this paradigm, as disability is expected to increase over time in a majority of patients. Therefore, delaying or slowing functional loss becomes a valuable goal of MS rehabilitation. In a consensus statement on rehabilitation in MS, a task force convened by the National Multiple Sclerosis Society defined rehabilitation as, “a process that helps a person achieve and maintain maximal physical, psychological, social and vocational potential, and quality of life consistent with physiologic impairment, environment, and life goals. Achievement and maintenance of optimal function are essential in a progressive disease such as MS” (2).
Even though rehabilitation is integrated as an important component of the comprehensive care of MS (3), obstacles to its implementation remain, and evidence to guide decision making remains insufficient (4). In this chapter, we introduce the rehabilitation process, instruments used to measure the results of rehabilitation and related conceptual framework, as well as practical applications of rehabilitation in MS.
THE REHABILITATION PROCESS
Referral
A patient’s access to rehabilitation services is most often contingent upon a referral from the neurology treating team or primary care physician. Tables 17.1 and 17.2 describe the main goals for referring a patient to specific rehabilitation professionals and specialized rehabilitation services. To maximize the chances of a positive outcome, the main elements of the referral must be kept in mind:
1. To which rehabilitation professional(s) should the patient be referred? Rehabilitation is by nature a multidisciplinary specialty, but all professionals do not need to be involved in the care of a particular patient at all times. Even though there is a partial overlap in the expertise and problems addressed, it is important to refer the patient to the appropriate professional. The list provided in Table 17.1 is extensive, but not exhaustive. For example, psychologists, social workers, recreation therapists, and music or art therapists also can be involved in the rehabilitation process. Another important component is the professional’s knowledge and expertise in MS. Some MS centers offer rehabilitation services on site, but in many instances the patient needs to be referred to a therapist in the community. It is therefore important to establish a referral network, seeking therapists with neurorehabilitation training and expertise.
2. What is the purpose/goal of the referral to rehabilitation services? It is essential that the reason for the referral and the expected outcome be discussed with the patient (and family when appropriate) as precisely as possible. This promotes an understanding of how rehabilitation “fits” within the individualized MS management plan, gives patients an opportunity to talk about their own goals, increases their motivation, and helps set realistic expectations regarding the results of rehabilitation. This information should also be shared with the rehabilitation professional. Goals and expectations may be adjusted over time on the basis of feedback from the rehabilitation professionals and from the patient. Specialized rehabilitation services may be sought to address specific needs, such as adapted driving.
3. What is the best rehabilitation setting to address the patient’s needs? In most cases, MS rehabilitation interventions are provided in an outpatient setting where space, setup, and equipment are often optimized. However, for patients who cannot drive or have adequate transportation, or when the goal is specifically to assess performance and work on functional tasks within the home environment, home rehabilitation services should be considered. Inpatient rehabilitation is indicated when patients have more complex needs and require more intensive rehabilitation involving several types of therapies. In most cases, patients are transferred to inpatient rehabilitation from a medical or surgical acute inpatient unit after a major health event (e.g., severe MS exacerbation, sepsis, surgery). Less commonly, admission to inpatient rehabilitation may also occur directly from home; for example, when patients experience a rapid functional decline within a relatively short time frame, compromising their ability to function at home, but have a good potential to regain function. Thanks to technological advances, telehealth and telerehabilitation can now be offered more widely, and could help individuals with limited mobility or who live in remote areas have access to practitioners specialized in MS, although they are not yet widely used (8).
TABLE 17.1 Professionals Involved in MS Rehabilitation
REHABILITATION PROFESSIONALS | EXAMPLES OF INDICATIONS |
Physiatrist (5) | Complex symptom management and functional issues requiring the coordination of multiple rehabilitation interventions (e.g., spasticity management) |
Rehabilitation nurse, advanced practice nurse, physician assistant |
|
Physical therapist (6) | Lower extremity impairments Teaching of home exercise program Gait/balance training Mobility aides fitting/training |
Occupational therapist (7) | Upper extremity impairments Limitation of self-care activities Fatigue management Upper extremity splinting Use of assistive devices for ADLs Home/work modifications |
Speech language pathologist | Language and speech impairment Dysphagia |
Orthotist | Fabrication and fitting of orthotics |
ADLs, activities of daily living; MS, multiple sclerosis.
TABLE 17.2 Specialized Rehabilitation Services
SERVICE | MAIN GOALS |
Driver rehabilitation | To assess driving performance (in the office and on the road, sometimes with a driving simulator) To provide on-the-road training To determine the need for vehicle adaptations (e.g., hand controls) and train patients to their use |
Vocational rehabilitation | To help gain or maintain employment despite functional limitations |
Wheelchair/seating clinic | To determine the most appropriate wheeled mobility device and seating arrangement for the patient, provide the information needed for reimbursement, train the patient, and assess the need for wheelchair/seating adjustments over time |
Functional capacity evaluation | To assess the need for work accommodations To document physical performance for disability application |
Cognitive rehabilitation | To perform exercises that aim at enhancing cognitive performance in daily activities To teach compensatory strategies |
161Assessment
Rehabilitation professionals share common concepts in order to describe a patient’s current functional status and rehabilitation goals. Disablement models have refined the operational definitions of these concepts, which have been used for clinical practice, clinical research, and healthcare policy. In Nagi’s disablement model, an active pathology results in impairments (abnormalities in body functions), leading to functional limitations (limitations in the performance of usual daily activities), and to disability (limitations in the fulfilment of personal and societal roles). In this model, the focus of care progresses from the disease process or injury, to body systems, to the person as a whole, and finally to the person within a community and a society (9). The National Center for Medical Rehabilitation Research (NCMRR) disablement model added to Nagi’s model an emphasis on societal limitations, and more recently a focus on interventions to address or prevent limitations, particularly rehabilitation (10).
Currently, the most utilized framework for rehabilitation worldwide is the ICF, published by the WHO (11). This framework builds on the models mentioned earlier. The ICF classifies the consequences of medical conditions (disease, injury, malformation) in terms of body function and structure, activities, and participation. In addition, the ICF takes into account personal and environmental factors. The ICF is useful in identifying problems and goals relevant to rehabilitation. For example, a patient in the early stages of MS after an exacerbation with partial transverse myelitis, who works on an assembly line in a factory, may experience chronic weakness and spasticity in one leg (alteration of body function), resulting in difficulty walking and standing for long periods (activity limitation), and consequent inability to perform work duties full time (participation restriction). After rehabilitation, the patient’s ability to work may be preserved by improving spasticity via stretching and symptomatic medication, by improving walking through physical therapy (PT) and the use of an ankle–foot orthosis, and by recommending modifications to the work environment.
Examples of assessment tools that can be used for rehabilitation are listed in Table 17.3. This list is not exhaustive, and more comprehensive information can be found in chapters 19–21, 25–30, and 36. The same instruments may be used to measure individual patient performance and to set quantitative goals for a course of rehabilitation, and to assess changes at the group level in clinical trials of rehabilitation.
While conceptual models such as the disablement model may seem remote from daily clinical practice, they are actually instrumental to perceptions and decision making at the level of the patients (and families), healthcare providers, payors, and healthcare policy stakeholders. One common practical example is the use of assistive devices to enhance mobility. In a traditional disease severity model, reflected in widely used outcome measures such as the Expanded Disability Status Scale, using a cane, walker, or wheelchair results in worse scores, and indeed the need for such devices reflects a progression in the overall disease course. However, at a given point in time, using an assistive device may allow individuals to improve their activity or participation limitations, thereby reducing their disability.
These models have also been used in MS rehabilitation research. In a study published by Klaren et al., measurements classified according to Nagi’s disablement model were administered to 63 individuals with MS. Using path analysis, a statistical model was developed that provided an excellent fit for the data. In this statistical model, impairments (aerobic fitness and muscle strength) were indirectly associated with disability limitations (disability limitation subscale of the abbreviated Late Life Function and Disability Inventory [LL-FDI]) through lower extremity functional limitations (lower extremity function subscales of the LL-FDI), but not functional performance (Timed 25 Foot Walk) (12).
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OBSTACLES TO REHABILITATION IN MS
As the awareness of the role of rehabilitation grows among patients and healthcare providers, it is important to acknowledge limitations and obstacles and to take them into account when planning a referral. Some limitations stem from the disease itself. Fatigue and depression may decrease the patient’s motivation to engage in a rehabilitation program. MS symptoms often worsen transiently with exertion, making it necessary to determine the right “dose” and type of exercises for each patient. Fluctuations in symptoms and functional performance over time require adjustments to the goals and contents of rehabilitation. Access to rehabilitation services may be compromised by the absence of neurorehabilitation specialists in the patient’s area, by difficulty getting transportation, and by limits imposed by third-party payors (many patients have a limited number of PT and occupational therapy [OT] sessions covered per year, and maintenance of functional performance is generally not accepted as a valid indication to start or continue rehabilitation). Patient education, communication between providers, and assistance with access problems all help overcome these obstacles.
FOR WHAT PURPOSE SHOULD REHABILITATION BE USED IN MS?
Education and Teaching of a Home Exercise Program
The development of an exercise program, to be performed by the patient at home or in a gym, independently or with a helper, is one of the goals of most rehabilitation programs. Randomized studies have demonstrated the benefits of exercise in MS on fitness, fatigue, muscle strength, mood, quality of life, and function. A meta-analysis based on results from 22 publications showed a small but significant improvement of walking performance after exercise training (13). Both aerobic (endurance) exercise and resistance training were shown to be effective (14).
In practice, it is often difficult for patients with MS to initiate a physical exercise routine on their own, owing 163to the obstacles discussed. This limitation further exposes them to physical deconditioning, and increases the risk of comorbidities such as osteoporosis and cardiovascular conditions. Therefore, a referral to a PT or OT is strongly recommended to optimize patients’ exercise routines. At the early stages of MS, one visit may be sufficient to teach an individualized program. Later in the course of the disease, a series of sessions is often needed to initiate an adapted exercise routine. The general rule for exercise in MS is to begin with a short duration and low intensity, and to increase very gradually (“start low, go slow”). If overheating causes a transient worsening of symptoms, it can be avoided by using a fan or cooling garments, or by exercising in water. Although clinicians used to discourage patients from exercising because of fears of overheating, this is now recognized to only cause transient symptoms in a subset of patients and does not cause permanent neurologic injury.
Comprehensive Symptom Management
Rehabilitation can be integrated into the management of MS symptoms, particularly fatigue and spasticity. In fact, rehabilitation may at times be the first line of treatment, before medications or other interventions.
Fatigue is one of the most frequently reported symptoms by MS patients, and has a profound impact on functional performance and quality of life. The comprehensive management of MS fatigue includes behavioral changes aimed at improving and preserving energy, often initiated by OTs or PTs, and encompasses exercise, modification of daily activities, and the use of assistive devices. Detailed recommendations for the management of fatigue can be found in Chapter 19.
Spasticity is another frequent indication for referral to PT and OT, often in conjunction with other treatment modalities (see Chapter 29) (15). All patients with spasticity should initiate a stretching routine under the supervision of a rehabilitation professional, to ensure that the stretches will be performed with an effective and safe technique. In patients with severe disability, family members and home health aides need to be trained to perform stretching. Other rehabilitation modalities relevant to spasticity management are splinting, serial casting, brace fitting, and functional training. In addition, botulinum toxin therapy and intrathecal baclofen therapy are often managed by physiatrists (16).
Even though there is evidence suggesting that a rehabilitation approach is helpful in chronic pain management (17), specific evidence related to MS is lacking.
Task-Specific Rehabilitation
Task-specific rehabilitation is focused on training the patient to a specific function or activity, and can play an essential role in helping to maintain a patient’s independence. The function that has been the most studied is walking, with treatment modalities including conventional gait training and the use of advanced technology such as body weight supported treadmill training and the use of robotics (see Chapter 30). Other examples include balance and a variety of activities of daily living (ADLs; basic ADLs mostly represent self-care tasks, while instrumented ADLs [IADLs] refer to more complex activities such as cooking a meal and managing bills). Assessment and rehabilitation for dysphagia and dysphonia, performed by speech language pathologists, also fall into this category. Cognitive rehabilitation involves task-specific training, and aims at improving specific impairments (e.g., attention/concentration deficit) and teaching compensatory strategies (e.g., use of memory aids) (18). Driving is an essential activity for community mobility, and as a consequence a patient’s ability to drive safely is a sensitive discussion topic. Driver rehabilitation specialists (often OTs) perform in-office and on-the-road (or via a driving simulator) assessments (19), and can help preserve a patient’s ability to drive when indicated by providing training, and by recommending vehicle adaptations and modifications, such as hand controls. Another important goal of MS management is to preserve the patients’ ability to work, as the disease affects them at the peak of their productive years. A functional capacity evaluation (FCE), usually performed by a PT or an OT, helps quantify a patient’s physical ability in relation to employment (e.g., sedentary vs. more physically demanding work). FCEs are often used to support an application for disability, but may also help formulate recommendations for workplace accommodations. Vocational rehabilitation services (discussed in Chapter 36) can provide further assistance in maintaining a patient’s ability to work.
Evaluation and Training for Assistive Devices and Orthotics
Even though a prescription from a physician, a physician assistant, clinical nurse specialist, or nurse practitioner is required to obtain assistive devices and orthotics, rehabilitation professionals play a key role in determining which type of equipment is most appropriate for the patient, in providing supporting information to obtain reimbursement (particularly for wheeled mobility devices), in helping with fitting and adjustments, and in training patients to use their devices efficiently and safely. A comprehensive description of orthoses and assistive devices that can be prescribed to patients with MS are discussed in Chapter 28. Extensive information about assistive technology, including suppliers, can be found at www.abledata.com. More specific information related to MS is available on the National Multiple Sclerosis Society website (https://www.nationalmssociety.org/Living-Well-With-MS/Work-and-Home/Technology).
Rehabilitation After MS Exacerbations
MS exacerbations resulting in new onset of functional limitations, or worsening of preexisting disability (particularly those resulting from lesions involving the spinal cord and brain stem) constitute a valid indication for rehabilitation. The loss of function typically occurs over a short time period, and even though some recovery is 164expected in the following weeks and months, residual disability from exacerbations is common (20,21). A randomized controlled trial of inpatient rehabilitation in 40 MS patients treated with intravenous (IV) steroids for an MS exacerbation showed improvement in neurological disability and functional performance at 3 months, compared to routine care (22). Another study of inpatient rehabilitation after treatment with corticosteroids for MS exacerbation, using an uncontrolled pre–post intervention design, showed improvement of Expanded Disability Status Scale scores and functional performance scores (Barthel Index, Functional Independence Measure) at the time of discharge (23). Contrasting with these findings, a randomized single-blind clinical trial of outpatient rehabilitation twice per week for 6 weeks, starting 4 weeks after IV methylprednisolone treatment for an exacerbation of MS, showed no significant between-group differences in Incapacity Status Scale and 36-Item Short Form Health Survey (SF-36) scores at 3 months or 1 year (24). These observations suggest that the intensity of rehabilitation plays a role in the efficacy of the intervention. In practice, the onset of rehabilitation may need to be delayed until the peak of the relapse has passed, to ensure that the patient is able to tolerate the therapies.
Rehabilitation for Progressive MS
An emphasis has been placed recently on finding treatments for progressive forms of MS (25). There is evidence suggesting that rehabilitation is effective in this patient population, although most of the studies were thought to be underpowered in a recent literature review (26). A randomized single-blind controlled trial of inpatient rehabilitation showed improvement of activity performance (FIM) and self-reported health status (SF-36) after 3 weeks in the treatment group, compared to a no-intervention group (approximately 80% of the subjects in each group had progressive MS) (27). Another study of inpatient rehabilitation in patients with progressive MS showed improvement of disability, handicap, psychological status, and perceived physical health status, which was sustained for at least 6 months (28). Di Fabio et al. observed a significant decrease in symptom frequency and fatigue at 1 year, and a slower progression of disability in MS patients receiving outpatient rehabilitation, compared to no intervention (29). A more recent randomized controlled trial compared a 12-month comprehensive rehabilitation intervention (inpatient followed by outpatient) to usual care (wait list), and found a significant improvement of FIM-motor scores in the treatment group. A significantly greater proportion of patients in the control group exhibited a worsening of functional performance on the FIM (58.7% vs. 16.7%; p < .001). No significant benefit was observed on self-report measures (MS Impact Scale and General Health Questionnaire) (30). Altogether, these studies suggest that both inpatient and outpatient multidisciplinary rehabilitation improve or stabilize functional status in some patients with progressive MS, although the carryover of the benefit after the end of rehabilitation needs to be determined. Wheelchairbound individuals with MS are often not included in rehabilitation studies, although new studies are specifically targeting this subgroup of more disabled individuals (31).
CONCLUSION
Rehabilitation should be considered in the management of MS at all stages of the disease. The nature, intensity, and setting of rehabilitation interventions are determined on the basis of the patient’s needs and on mutually agreed upon goals. As the success of rehabilitation relies on long-term behavioral modifications, it is important to initiate these interventions early, and to explain to the patient how they fit within the overall management plan for their disease. Ongoing communication is essential in ensuring that outcomes are optimized.
