Rehabilitation in Multiple Sclerosis
Francois Bethoux
Randy Karim
Robert W. Motl
Introduction
Multiple sclerosis (MS) is a disease that is commonly treated with disease-modifying drugs (DMDs), but there is increasing emphasis placed on rehabilitation as a core component of the comprehensive, multidisciplinary management of MS. For example, rehabilitation is integrated into the guidelines for management of MS symptoms such as fatigue1 and spasticity.2 The purpose of this chapter is to summarize key concepts, outcome measurement, and elements of evidence regarding the use of rehabilitation in individuals with MS.
Definition and Concepts
In an expert opinion paper published by the National Multiple Sclerosis Society, rehabilitation in MS was defined 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.”3 This definition highlights one of the challenges of MS rehabilitation: in the context of a disease process generally resulting in worsening functional limitations over time, maintaining function is a valid goal, whereas the traditional model
of rehabilitation focuses on restoring or improving function. This does not mean that functional gains are not possible in MS, but often payors require periodic documentation of progress for continued coverage of rehabilitation services. This requirement in the context of Medicare coverage was challenged in a recent lawsuit (Jimmo v. Sebelius). In the settlement agreement, the Center for Medicare and Medicaid Services clarified that lack of improvement does not automatically lead to denial of coverage, as long as the need for skilled services can be demonstrated to “provide care that is reasonable and necessary to prevent or slow further deterioration.”4
of rehabilitation focuses on restoring or improving function. This does not mean that functional gains are not possible in MS, but often payors require periodic documentation of progress for continued coverage of rehabilitation services. This requirement in the context of Medicare coverage was challenged in a recent lawsuit (Jimmo v. Sebelius). In the settlement agreement, the Center for Medicare and Medicaid Services clarified that lack of improvement does not automatically lead to denial of coverage, as long as the need for skilled services can be demonstrated to “provide care that is reasonable and necessary to prevent or slow further deterioration.”4
The application of rehabilitation requires a clear target and approach based on a conceptual framework in MS. The World Health Organization published the International Classification of Function, Disability, and Health (ICF), which proposes a conceptual framework and a classification system to describe and record the consequences of health conditions. These consequences are described in terms of impairment of body functions and structures, as well as limitations of activity and participation (defined as involvement in a life situation). Personal and environmental factors are taken into account in the model.5 The ICF can be a useful tool for MS rehabilitation, particularly for the description of functional limitations and goal setting. Based on expert opinion, a brief and a comprehensive ICF core set was developed specifically for MS (Table 31.1).6,7
In addition to the ICF framework, the construct of health-related quality of life (HRQOL) is very relevant to rehabilitation. Several definitions of HRQOL have been proposed. It is generally accepted that quality of life (QOL) is a multidimensional construct encompassing judgments or evaluations of physical, mental, emotional, and social functioning. HRQOL focuses on the aspects of QOL related to general health and/or health conditions and their treatments.8
The term neurological rehabilitation (or neurorehabilitation) is commonly used when rehabilitation seeks to optimize function among people with disorders of the nervous system. For the sake of simplicity, we will continue to use the term “rehabilitation” in this chapter.
Strategies for Rehabilitation in MS
The strategies used in rehabilitation can be divided into two categories:
Remediation, which directly aims at improving or restoring a body function or structure. This could involve muscle strengthening and gait training as remediation interventions for reversing walking impairment and gait disturbance.
Compensation, which aims at developing compensatory strategies to “work around” the functional limitation. For example, the use of a scooter in a patient with severe gait and balance impairment can help preserve safe indoor and outdoor mobility.
TABLE 31.1 ICF BRIEF CORE SET FOR MULTIPLE SCLEROSIS | ||||||||||||
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In practice, both strategies are combined to achieve desired functional goals.9 Although the principles and effects of compensatory strategies are easily understood (albeit often insufficiently studied), one may question the potential for neurological restoration in the setting of multifocal central nervous system (CNS) damage from MS. However, rehabilitation targets several causes of functional limitations:
Addressing secondary causes of functional limitations: although CNS damage is considered the primary cause of functional limitations from MS, secondary factors may be positively affected by rehabilitation. One common example is physiological deconditioning, which is thought to be related to decreased physical activity and was found to partially explain walking capacity.10 Comorbidities (e.g., musculoskeletal, cardiovascular) are associated with worse disability in the context of MS, and some of them can be addressed or prevented in part through rehabilitation.11
Promoting neuroplasticity: neuroplasticity can be defined as the ability of neurons within the CNS to adapt to new circumstances, including damage from disease or injury, through functional and structural changes.12 Spontaneous cortical reorganization, representative of neuroplasticity, was demonstrated in MS and found to be associated with recovery of clinical function (adaptive plasticity).13 Maladaptive plasticity may also occur and is thought to be related in part to disuse,
creating a negative reinforcement loop (e.g., motor impairment in one limb may lead to favoring the nonaffected limb in the performance of daily activities and in turn may lead to maladaptive cortical reorganization).14 Therefore, rehabilitation aims at promoting adaptive plasticity while attempting to reverse maladaptive plasticity.
Neuroprotection and disease modification: animal studies and evidence from other CNS conditions suggest that a neuroprotective effect of physical exercise in MS is plausible, and limited clinical evidence seems to support this assumption.15 Furthermore, possible effects of physical exercise on clinical and imaging markers of MS disease activity have been recently reported.16,17 However, the evidence remains inconclusive. As pharmacological treatments promoting neural repair are being developed in MS, the effects of their combination with rehabilitation will hopefully be tested.
Evidence to Support and Guide the Use of Rehabilitation Services in MS
As in all other medical fields, there is a strong drive to develop a body of evidence to guide the prescription and delivery of rehabilitation services in MS, keeping in mind known challenges specific to this field and to the disease. Rehabilitation involves a variety of disciplines (e.g., physical therapy, occupational therapy, speech language pathology), and each discipline uses various techniques. Furthermore, rehabilitation interventions and techniques are often combined within a rehabilitation program and vary from patient to patient depending on needs, goals, and preferences. The resulting complexity and heterogeneity of the nature and contents of rehabilitation treatment, as well as the variability in outcome measures, complicate the comparison of study results and limit the ability to perform aggregate analyses. In addition, the design of a placebo intervention and participant blinding are difficult in the context of a rehabilitation randomized controlled trial (RCT). In a systematic review of published evidence from 1970 to 2013, the Guideline Development, Dissemination, and Implementation Subcommittee of the American Academy of Neurology pointed out a “paucity of well-designed studies,” as did a more recently published “systematic review of systematic reviews.”18,19 Nevertheless, evidence on the efficacy of rehabilitation interventions in MS is accumulating, as we will illustrate in the section on rehabilitation interventions.
Outcome Measurement for MS Rehabilitation
A corollary to the drive for strong evidence is the need for consistent use of standardized, valid, and reliable measures of the outcomes of MS rehabilitation by clinicians and researchers. Increasingly, MS-specific measures
are being developed, and generic measures are being validated in MS. In addition to psychometric properties, ease of use and relevance to the patients’ characteristics and rehabilitation goals are important to consider when choosing a measure.
are being developed, and generic measures are being validated in MS. In addition to psychometric properties, ease of use and relevance to the patients’ characteristics and rehabilitation goals are important to consider when choosing a measure.
Providing an exhaustive list of outcome measures for MS rehabilitation is beyond the scope of this chapter. Compilations of relevant information are freely available online:
The Rehabilitation Measures Database is maintained by the Shirley Ryan AbilityLab (formerly Rehabilitation Institute of Chicago) and provides detailed information on over 400 measures that can be used in rehabilitation (https://www.sralab.org/rehabilitation-measures). This database is not specific to MS.
The Multiple Sclerosis Outcome Measures Task Force, appointed by the Academy of Neurologic Physical Therapy section of the American Physical Therapy Association, reviewed 63 outcome measures and issued recommendations for their use in clinical practice, education, and research in MS rehabilitation (http://neuropt.org/professional-resources/neurology-section-outcome-measures-recommendations/multiple-sclerosis).
We will briefly discuss tools that provide a global assessment but do not focus on a specific impairment or activity limitation (Table 31.2).
TABLE 31.2 OUTCOME MEASURES FOR MULTIPLE SCLEROSIS (MS) REHABILITATION | ||||||||||||||||||||||||||||||||||||||||
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MS-Specific Measures
The Multiple Sclerosis Outcome Assessments Consortium has issued evidence-based recommendations for outcome measures covering important domains of MS-related disability: the Timed 25 Foot Walk for walking, the Nine Hole Peg Test for manual dexterity, the Low Contrast Letter Acuity test for vision, and the Symbol Digit Modalities Test for cognition.20
The Expanded Disability Status Scale (EDSS)21 is widely used in clinical trials of DMDs for MS. Although it is called a measure of disability, the EDSS covers the ICF domains of body functions (reflected in the Functional Systems) and activities (particularly in relation to walking). Owing to its poor responsiveness to rehabilitation interventions, it is rarely a primary outcome measure in rehabilitation clinical trials but is often used to categorize or screen study participants based on the severity of the neurological “disability” from MS.22
The Incapacity Status Scale (ISS) is a lesser known companion to the EDSS in the Minimal Record of Disabilities for MS, published by the National Multiple Sclerosis Society in 1985.23 Most of the 16 items of the ISS are related to activities (e.g., climbing stairs, walking, bathing, dressing), whereas some are related to body functions (e.g., vision, speech, hearing). The scoring is based on difficulty performing activities (or the interference of impairments with activities and participation), the need for assistive equipment, and the need for human assistance. The ISS was recently shown to correlate with walking speed and with the EDSS in an outpatient rehabilitation population.24
The Patient-Determined Disease Steps is a self-report outcome measure of MS-related disability, which is strongly correlated with the EDSS and with measures of walking.25
The Multiple Sclerosis Impact Scale (MSIS-29) is a 29-item questionnaire that explores the consequences of MS on daily activities (2-week recall period). Most of the items inquire about the degree of bother relative to a variety of impairments, activity limitations, and participation restrictions.26
MS-specific HRQOL measures include the MS Quality of Life Inventory, the Functional Assessment of MS (FAMS), the Multiple Sclerosis International Quality of Life (MusiQol) and the MS Quality of Life-54 items (MSQOL-54).27
Generic Measures
Global measures of activity limitations: the Barthel Index (BI) and Functional Independence Measure (FIM) assess performance on activities of daily living based on the need for assistive devices or human assistance. The BI is a 10-item scale, whereas the (FIM) contains 18 items with defined motor and cognitive subscales. These instruments are most commonly used for inpatient rehabilitation and in that setting were found to be reliable and sensitive to change. A study focused solely on individuals with MS showed that FIM scores are correlated with care needs.28 In a more recent study of the BI and FIM in a mixed inpatient neurological population of 149 patients (43% with MS), both scales exhibited satisfactory acceptability, reliability, convergent validity, and responsiveness to change.29
HRQOL scales: the Medical Outcomes Study 36-item Short Form Health Survey (SF-36) is arguably the most widely known generic HRQOL scale and has been used in studies of MS rehabilitation, although concerns have been raised regarding is psychometric properties in this population.30 The Neuro-QoL (Quality of Life in Neurological Disorders) measurement tool, although not specific to MS, was validated in a sample of patients with MS during its initial development.31 Neuro-QoL includes 13 scales to assess the various domains of HRQOL relevant to neurological disorders. Short versions of the scales (Short Forms) and computer-adaptive testing both decrease the responder burden.
Rehabilitation Interventions
Multidisciplinary Rehabilitation
Individuals with MS are not often admitted for inpatient multidisciplinary rehabilitation. One exception is severe functional loss from an MS relapse (or from an acute medical complication or surgery), wherein substantial functional recovery is expected and intensive skilled rehabilitation services are necessary. In one RCT, inpatient rehabilitation was found to be superior to standard outpatient care on measures of neurological disability and physical function.32 Favorable results were also reported (vs. home exercise or wait list) after inpatient rehabilitation in patients with relapsing and progressive MS without acute worsening of disability. Although referrals for multidisciplinary outpatient rehabilitation are more common, this modality has not been more extensively studied. A Cochrane review of multidisciplinary inpatient or outpatient rehabilitation programs in adults with MS concluded that there was strong evidence of short-term gains on activity and participation but not on impairment.33 Another review concluded that evidence supported the effectiveness of outpatient rehabilitation on disability but was otherwise inconclusive.18
Motor Rehabilitation
Motor rehabilitation generally involves multiple components: education and goal setting, exercise training (including stretching, aerobic, resistance, and task-specific training), and training to the use of assistive devices and orthotics. Increasingly, technology-assisted training is proposed as a means to enhance motor rehabilitation.
Mobility (Gait and Balance) Rehabilitation
A variety of interventions have been proposed to enhance mobility in individuals with MS, although not all of them have been extensively tested in
RCTs.34 Although clinical trials of exercise and motor rehabilitation often focus on individuals with mild to moderate mobility disability, a few studies have specifically enrolled patients with progressive MS who have severe mobility disability.35
RCTs.34 Although clinical trials of exercise and motor rehabilitation often focus on individuals with mild to moderate mobility disability, a few studies have specifically enrolled patients with progressive MS who have severe mobility disability.35
Exercise training
A meta-analysis of exercise training in MS showed significant improvement of walking.36 The optimal frequency, duration, and type of training depending on individual goals and characteristics remain to be fully defined. The Canadian physical activity guidelines set minimum exercise requirements for people with mild to moderate disability from MS: 30 minutes of moderate intensity aerobic activity twice per week, and strength training for major muscle groups twice per week. The guidelines can be found at: http://www.csep.ca/CMFiles/Guidelines/specialpops/CSEP_ MS_PAGuidelines_adults_en.pdf. Project GEMS (Guidelines for Exercise in Multiple Sclerosis) aims at testing the feasibility and efficacy of a 4-month home-based exercise training program based on physical activity guidelines and social cognitive theory. The feasibility and acceptability of this program was demonstrated in a recently published RCT.37 Further discussion of exercise prescription for individuals with MS can be found in Chapter 35.
Physical Therapy
Ideally, physical therapy (PT) should be delivered by neurotrained therapists familiar with MS. The treatment plan may involve an array of interventions based on individual needs and goals, including stretching, combinations of exercise modalities (aerobic training, resistance training, and a common emphasis on task-specific training), as well as recommendations for and training to the use of orthotics and assistive devices. Overall, PT was found to produce a significant, albeit small, improvement of walking38 and balance39 in meta-analyses. In wheelchair-bound patients, optimization of trunk control and transfer ability constitutes an important rehabilitation goal. Wheelchair users also often exhibit impaired respiratory function, particularly restrictive dysfunction, a significant cause of morbidity and mortality in MS.40 Unfortunately, respiratory function is rarely monitored in patients with MS, even though respiratory rehabilitation may be beneficial.41
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