|Year : 2015 | Volume
| Issue : 5 | Page : 43-47
Rehabilitation of multiple sclerosis patients in India
Director, Surya Neuro Centre, Mumbai, Maharashtra, India
|Date of Submission||07-Jul-2015|
|Date of Decision||01-Aug-2015|
|Date of Acceptance||05-Aug-2015|
|Date of Web Publication||11-Sep-2015|
Surya Neuro Centre, 310 Lotus House, 33/A New Marine Lines, Next to Liberty Cinema, Mumbai - 400 020, Maharashtra
Source of Support: None, Conflict of Interest: None
| Abstract|| |
Multiple sclerosis (MS) is a chronic progressive disease which is one of the leading causes of handicap in young subjects. The large range of symptoms associated with MS lead to continuing decline in neurologic status and quality of life. The coexistence of physical and cognitive impairments, together with the imprevisible evolution of the disease makes MS rehabilitation very challenging. The main objective of rehabilitation is, therefore, to ease the burden of symptoms by improving self-performance and independence. Inpatient, outpatient and Home rehabilitation with multidisciplinary team has been shown to be beneficial in improving disability. Individualized programs elaborated by a multidisciplinary team of experts are the key to success of rehabilitation. Family plays a big role and Family Based Rehabilitation will be important in long term rehab program in MS.
Keywords: Disability, family based rehabilitation, multi-disciplinary team, multiple sclerosis, MS, neurorehabilitation
|How to cite this article:|
Surya N. Rehabilitation of multiple sclerosis patients in India. Ann Indian Acad Neurol 2015;18, Suppl S1:43-7
| Introduction|| |
Multiple sclerosis (MS) is an immune-mediated inflammatory disease of the central nervous system (CNS) that affects an estimated 2.5 million adults worldwide.  The wide range of symptoms encountered in MS includes visual impairment, diplopia, muscle weakness, extreme fatigue, imbalance of gait, sensory disturbance, impaired speech, bulbar symptoms, sphincter incontinence and cognitive dysfunction. These symptoms often lead to a poor health-related quality of life (HRQOL), [2-4] neurologic disability, and high health care costs(about $1.7 billion annually in Canada, for example). 
With the advent of MRI and an increasing number of neurologists, the number of MS cases worldwide has risen substantially. The newer disease modifying drugs have only been partially effective in reducing relapse rates and limiting disease progression. They are accessible to only a few due to their high cost. As a result, a large number of patients are left behind with significant impairment in daily living. Thus, ever increasing cohort of severely disabled patients will largely depend on appropriate rehabilitation to improve their quality of life.
| MS in India|| |
Various studies from India have reported low prevalence rates of MS cases (1-2/100,000 population).  The only exceptions are the studies in the small Parsi community by Bharucha et al. and Wadia et al. which reported a high MS prevalence of 21-26/100,000. ,
In the developing countries like India, as elsewhere, MS affects the young (average age of onset around 25-30 years) and is seen more commonly in women than in men. In Asia, two forms of clinical presentations have been described:
- Clinical features restricted to optic nerve and spinal cord (designated as optico spinal MS (OS MS) or Asian MS). 
- Manifestations involving cerebellum, brainstem, cerebral white matter, optic nerve, and spinal cord (Western MS).
Neuromyelitis Optica (NMO) is reported to be more frequent in Asia and Africa than in the West. It occurs both as a monophasic and a relapsing illness. 
| Rehabilitation Challenges in India|| |
Developing countries like India, Pakistan, Bangladesh and Sri Lanka all face the same problem- a huge population with a woefully inadequate number of skilled and trained neurorehabilitation specialists.  About 70% of India's 1.3 billion population stays in rural areas and 30% live below the poverty line, with no access to any kind of rehabilitation facility. Even in urban areas with access to private medical services, the number of skilled and trained professionals is too small to cater to the population. Rehabilitation is now widely recognised as an essential requirement for the masses. Sadly, the current gap between the need and supply of rehabilitation services is astoundingly high.  There are at present only a handful of well-equipped modern rehabilitation centres and qualified individual therapists trying to bridge this wide gap. These individuals try to impart the simple home care skills to close relatives and other caregivers of patients.
| MS Rehabilitation in India|| |
Rehabilitation in MS must address the issues of impairments, disabilities and handicaps:
- Impairments refer to those symptoms and limitations caused directly by CNS damage (e.g., decreased vision, decreased strength, spasticity, tremor, etc.).
- Disability refers to impaired function in the performing tasks (e.g., walking, bathing, etc.).
- Handicap refers to the reduced ability to participate in various life situations (e.g., driving, employment, etc.) and the environmental restrictions that the patient endures. 
Ideally, rehabilitation should begin as soon as the patient develops some disability. The MS rehabilitation can be divided into three main settings.
Patients with acute MS with significant persisting neurologic deficit such as impaired mobility, communication, swallowing and sphincter control, and who have the endurance to participate in the active program to achieve therapeutic goals should be hospitalized in the rehabilitation centre. The acute rehabilitation setting is appropriate for patients who meet the admission criteria and are able to tolerate three hours or more of active therapy per day.  Reading et al.  observed that 56% of 168 consecutive admissions to the acute care unit could have been managed in the less expensive setting of a rehabilitation unit. Inpatient rehabilitation can produce short term benefits in the levels of activity and participation for patients with MS. 
Patients whose neurological disability has stabilised and who are mobile are ideal for outpatient rehabilitation. Initially, the patient needs to come at least twice a week for a month and later, visits can be reduced to once a month for few months, depending on his/her progress.
The family plays an integral part in the care of the MS patient at the house. Home based rehabilitation should undoubtedly be the mainstay of therapy for patients with chronic disability in a resource-poor country like India.
Patients with restricted family support, (for instance, the spouse is working and cannot frequently visit the rehabilitation centre) or those staying far away, or who are bed ridden or have violent behaviour or cannot afford frequent travelling to the centre are considered in the family based rehabilitation (FBR).
In a joint family, responsibility is shared by other members who take care of the emotional, social and financial problems of the patient. Each family member learns the rehab plan and executes it as per availability of time. The FBR helps in early diagnosis and treatment, thus preventing or minimizing disability. Stress is also shared and depression and anxiety are reduced.
The Multiple Sclerosis Society of India (MSSI) is a charitable organization working for the welfare of MS patients. Established in 1985, it is involved in the care of nearly 4000 patients across India. The MSSI members not only provide professional care but also offer emotional, medical and social support to the patient as well as the family. It plays an important role in bridging the gap between the patients and the rehabilitation team member.
| Assessments for MS|| |
Owing to the wide range of symptoms and disabilities in MS, a comprehensive assessment of functional disturbances and of personal needs is essential for an individualized, goal-oriented treatment program.  The timing and mode of rehabilitation treatment should be set individually, based on the degree and extent of disability, and personal and environmental factors.
Because of the unpredictable course of the disease, various standardised systems of assessment are used to establish the disease status of the patient.
Minimal Record of Disability (MRD) profiles the main dysfunctions associated with MS and consists of five parts:
- Demographic information.
- Kurtzke Functional Systems (FS).
- Kurtzke Expanded Disability Status Scale (EDSS).
- Incapacity Status Scale (ISS), and
- Environmental Status Scale (ESS). 
Quality of life (QoL) is also significantly affected in MS and depends on patient characteristics as well as the emotional and social support that the patient gets from his caregivers. The main predictors of QOL in MS are the EDSS score, disease course, fatigue and depression. Female gender and advanced age are the main predictors of lower QoL in caregivers. 
| Limitations in Rehabilitation Management of MS|| |
Co-existence of following can be challenging for rehabilitation program:
- Severely disabled people derive equal or more benefit from rehabilitation than those who are less disabled but cognition and ataxia are refractory. 
- Cognitive disabilities such as memory trouble affects learning abilities and lack of progress and hindrance to reach the desired goal of improvement.
- Cerebellar syndrome causing ataxia and imbalance are a continuous challenge for rehabilitation specialist to make patient ambulatory.
| Goal Setting|| |
The goals of MS rehabilitation should be identified and prioritised according to the patient's condition. The treatment and interventions are included in the strategy and followed up for a reasonable long-term period. Initially, the patient needs to follow up every month and later every three months depending on their need for rehabilitation. As MS is a progressive disease with remissions and relapses, the goals and planning for rehabilitation change from time to time.
[TAG:2]Advantages of a Multidisciplinary Team [/TAG:2]
Rehabilitation should be undertaken by a multidisciplinary team (MDT). Each team member contributes to the successful management of specific problems. They coordinate with each other, as well as with family members and the patient in order to prioritize their goals and strategize treatment regimens.
The MDT should be headed by the neurophysician or physiatrist with specialized training in Neurorehabilitation. Other team members should include a physiotherapist for improving muscle strength, and balance, an occupational therapist who evaluates the patient's vocational abilities and helps in improving quality of life, a speech and language therapist who improves language and communication skills and addresses swallowing difficulties, a psychologist or psychiatrist who imparts counselling, retraining, and teaching strategies to cope with cognitive and affective impairment, and a urologist who deals with bladder, bowel and sexual dysfunction. The entire team together with the family and the patient are vital to the success of rehabilitation.
| Management of Specific Symptoms|| |
The main symptoms that need to be specifically attended to are spasticity, cognitive impairment motor, sensory and visual disturbance, and fatigue and bladder dysfunction.
| Spasticity|| |
Spasticity in MS occurs due to demyelinating lesions in the brain and/or spinal cord. It can cause severe pain and disability, resulting in a chain of secondary complications. Spasticity may result in muscle fibrosis and joint contracture, leading to skin breakdown, osteomyelitis and sepsis. The restricted mobility affects the quality of life, leading to isolation and depression. Spasticity can be generalised or focal. It can be aggravated by noxious stimuli like pain, full bladder, infection, extreme temperature and stress.
In assessing a patient with spasticity, it is important to identify new onset or a change in pattern of spasticity, to ascertain any precipitating or aggravating factors and to determine if it is causing a functional limitation or impairment. These factors will determine the plan for spasticity management.
Generalised spasticity can be treated by the judicious use of drugs like baclofen and tizanidine, along with carefully supervised physiotherapy. Unfortunately, spasticity drug treatment can be associated with undesirable side effects like sedation, reduced cognition and limb weakness. 
Focal spasticity in both upper and lower limbs can be effectively treated by the use of local botulinum A toxin.
In rare cases, when spasticity is refractory to standard pharmacologic and physical management strategies, irreversible surgical procedures like phenol nerve block or sectioning of nerves to specific muscles may be considered. Intrathecal Baclofen pump can be consider for the severe spastic paraplegia.
| Balance and Gait|| |
Gait ataxia and limb incoordination are difficult symptoms to treat. They require prolonged training and patience for improvement. The physiotherapist focuses mainly on improving posture and balance exercises. Drugs have little role to play in this disability.
Gait can be improved by providing artificial support appliances like ankle foot orthoses, canes, crutches, and walker, until the patient gains confidence in mobilizing by himself/herself. Wheel chair of various types are useful to prevent fall and injury with ataxia.
Specific balance and gait interventions depend on the type of impairments that contribute to the problem.  Maintaining postural control is an important outcome.  Programs such as Tai Chi,  Yoga, aquatics  and Feldenkrais  may be helpful in maintaining gait and balance function. Recently use of body weight supported treadmill training and use of robot like Lokomat® has been used at advance rehabilitation centres.
The occupational therapist and/or the rehabilitation nurse can help patients improve their activities of daily living as well as their mobility. Practical techniques and assistive devices ease the burden of dressing, bathing, eating, household chores, and daily care. 
| Cognitive Dysfunction|| |
Cognitive deficits occur in up to 60% of patients of MS.  It is, at times, difficult to diagnose cognitive dysfunction. Mini mental scale test, IQ tests and small questionnaires are required to detect deficits in learning, memory, reasoning, spatial or geographical understanding. The neuropsychologist and speech therapist work for correction of these deficits. Compensatory strategies such as appropriate time management, improved sleep hygiene, medication adjustments, memory cues and calendars are often helpful. Modafinil (Provigil) and CNS stimulants may improve attention span, working memory, and phonemic fluency.  Immunomodulating therapies have been shown to improve cognition in some clinical trials. [25-27]
| Bladder, Bowel, and Sexual Dysfunction|| |
For bladder disturbance, simple pelvic floor exercises can be taught. The patient may be trained for self catheterisation when needed. Anticholinergic drugs like oxybutynin (tolterodene tartrate is a useful alternative) are usually sufficient to address the incomplete emptying and hyperreflexia commonly seen in this condition. ,
Bowel disturbance and constipation and faecal incontinence can be managed by establishing a bowel programme. The patient needs to change his/her routine life style, increase dietary fibre and take laxatives such as lactulose for mild, and stimulant laxatives, such as senna and bisacodyl for severe constipation. 
For sexual dysfunction, Sildenafil (Viagra) represents a major breakthrough in the management of erectile dysfunction in men. In a randomised, placebo controlled trial involving 217 men with MS, the ability to achieve and maintain erections was significantly better in the treated group, with 92% reporting an improvement in sexual activity. 
| Fatigue|| |
Most MS patients complain of fatigue. The cause of fatigue could be due to multiple factors like weakness, spasticity, ataxia, depression, heat, poor sleep pattern and drugs used in MS. Fatigue management requires multidisciplinary therapy, including exercise program, behaviour modification, psychological counselling and medicines. Patients need to be trained in time management, pace of work, simplification of work and energy conservation techniques etc. Several medications have been tried like pemoline, amanditine, acetyl L-carnitine, modafinil, methylphenidate, and amino pyridines. ,,,
| Pain|| |
Pain is a common symptom in MS and can have a major impact on both activity and participation (disability and handicap).  It is chronic in nature in about 85% of cases and acute or paroxysmal in the remainder. Commonly encountered pain syndromes include trigeminal neuralgia, painful tonic spasms, and sensory symptoms including Lhermitte's symptom. Carbamazepine is most commonly used for acute paroxysmal pain. Gabapentin and pregabalin are also used. Chronic pain is usually multifactorial and often refractory to treatment. Amitriptyline is useful for dysaesthetic pain. Non-steroidal anti-inflammatory drugs, transcutaneous electrical nerve stimulation (TENS), and local heat can also be tried.
| Speech and Swallowing|| |
The speech and language therapist specializes in evaluating and treating speech, communication, cognitive, and swallowing problems. Speech and swallowing difficulties are due to spasm or stiffness of the muscles and patients learn to overcome this problem with the help of the speech and language therapist. The patient is taught various exercises to relax and strengthen the muscles controlling the vocal cords and to coordinate movements of jaw, tongue and lips for articulation and pronunciation. The therapist should lay more emphasis on communication than on accurate sound. This is called functional communication therapy. This includes developing techniques to simplify sounds, words or sentences in a way that ensures that the message is conveyed. Dysphagia evaluation may include video fluoroscopic or barium swallow studies to track the movement of food during swallowing.  Treatment is rehabilitative and educational. Changing the head or body position during eating may sometimes help. Eating smaller quantities at any one time may also reduce fatigue and choking.
| Conclusion|| |
MS affects individuals in the prime of their lives. The economic, emotional and social consequences of this disorder can be devastating, not only for the patient but for the entire family and society at large. Increased public awareness, timely and appropriate drug therapy and optimum neurorehabilitation form the cornerstones of successful MS management.
Organisation like MSSI could play an important role in bridging the gap between the patients and the rehabilitation team member in our country.
Without a doubt, neurorehabilitation plays a vital role in improving and minimizing impairment, disabilities and handicaps. A multidisciplinary approach is the ideal model for neurorehabilitation in MS. In the Indian setting, the Family Based Rehabilitation programme could be the answer to fulfilling the long term needs of disabled MS patients.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
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