University “Ss. Cyril and Methodius”, Faculty
of Philosophy, Institute of Special Education
and Rehabilitation, Skopje, R. Macedonia
Rashikj-Canevska O, Chichevska-Jovanova N. Some determinants of quality of life in patients suffering from multiple sclerosis. J Spec Educ Rehab 2015; 16(1-2): 17-35. http://dx.doi.org/10.1515/JSER-2015-0002
The impact of multiple sclerosis on the human brain was described back in 1830, and as early as the 1860s different entities were identified. It is one of the most common neurological disorders among the young population (1).
Multiple sclerosis is a chronic unpredictable disease that belongs to the heterogeneous spectrum of an idiopathic, inflammatory, demyelinating disease of the central nervous system (CNS). The term multiple sclerosis is based on the pathonatomical findings and originates from the terms “sclerosis” meaning hardened slaty (plaques) scar tissue located at many locations in the CNS, marked as “multiplex”. It is considered as an autoimmune disorder, meaning that the immune system incorrectly attacks the healthy tissue of the person. The signs and symptoms of the MS appear because the nerve fibers in the central nervous system (cranial brain and spinal cord) lose their ability for signal transmission. They are consequences of the neuropathological changes in the CNS. Pathoanatomical MS is characterized by foci of demyelination in different parts of the CNS, but with a predisposition to certain locations: optical nerves, brain stem and cerebellum (2, 3, 4).
It is estimated that about 2.5 million people around the world have MS. In the United States, about 200 new cases are diagnosed each week. An overall average estimated prevalence of the people suffering from MS in the world is 30 per 100.000 people, and in terms of the region’s largest prevalence seen in Europe, 80 per 100.000 people, then in the Eastern Mediterranean 14.9, in America 8.3 people, in the Western Pacific and South-East Asia there are 2.8 per 100.000 people, and in Africa 0.3 per 100.000 people (5, 6). Regarding the category of the countries, greater prevalence of the MS is observed in countries with high income, 89 per 100.000 people, followed by countries of middle rank, but better positioned middle-ranked countries have a higher prevalence of 32 per 100.000 people, compared to the lower middle-ranked countries that have 10 per 100.000 people. In the countries with low income the prevalence is 0.5. The greatest prevalence is seen in the following countries: Hungary with 176 per 100.000 people, Slovenia 150 per 100.000, Germany has 149, USA with 135 people per 100.000, Canada has a prevalence of 291, Czech 160, Norway 160, Denmark 227, Poland 120 and Cyprus 175 per 100.000 people, Sweden has a prevalence of 189. In the Republic of Macedonia there is not an accurate record of the people with multiple sclerosis, hence the estimated average prevalence is 24/100.000 (6–10).
In the world frames, the boundaries for the occurrence of the most common MS symptoms are between 25.3 and 31.8 years, with an average age of approximately 29.2 years (6–8). The emergence of the multiple sclerosis in children is rare and the frequency of occurrence is obtained from the world wide pediatrician’s reports. It is estimated that the appearance of the MS in children is between 0.4 and 5.6% of the total cases with multiple sclerosis, with the exception of one study conducted in Bari-Italy in the center for MS in 2002, where 10% of 793 patients were younger than 16 years (11, 12).
According to the International Federation of Multiple Sclerosis, the causes for this disease are not yet sufficiently known; generally it is believed that MS is a result of a combination of genetic, immunologic and environmental factors. Two positions for the etiology of multiple sclerosis dominate these last two decades, one of them says that the main cause of MS are genetic factors, while others have an opinion that MS is caused by an infective agent (13, 14).
The course of the MS varies from person to person, and two people in the same family can have different development, one person can have very progressive symptoms and associated problems, while the other person may have nearly no problems in everyday life. Despite this unpredictable disease, international experts for MS classified its course in four categories:
Relapsing – Remitting (RRMS): relapse is a state of new MS symptoms or the previous ones reappearing in a significantly worse form. The previously experienced symptoms may appear on different body parts. The medical staff usually defines this as a relapse i.e. as an episode of neurological symptoms that occurs at least 30 days after the previous episode, and lasts at least 24 hours.
Secondary progressive (SPMS): when a patient with relapsing-remitting MS shows signs of permanent worsening of the symptoms in the last sixth months, with or without relapses, then he is considered to have secondary progressive multiple sclerosis. This form starts with remittent repetitive course which over a period of 10 to 15 years transforms into the progressive phase with slow, but steady deterioration of the patient’s general condition.
Primarily-progressive (PPMS): occurs in only 10% of the patients and biologically differs from the other MS forms. This form has a slow progression from the beginning, no acute attacks; there can be occasional plateaus with minimal temporary improvements of the condition. Main characteristics that set aside the primarily progressive MS from the other forms are: older onset age, after 35 and 40 years, equal gender prevalence, a prominent involvement of the spinal cord with gradual atrophy and difficulty walking, MRI finding that shows relatively less damage, and contrast development of the lesions.
Progressively-remitting (PRMS): poses a relatively new classification of multiple sclerosis and occurs in only 5% of all patients. Patients with progressively remitting MS manifest slow progression of the disease, and from the very beginning are not much different from the primary progression (15,16).
As a result of the widespread occurrence of the pathological processes in the cranial and spinal cord and at the optic nerves, the signs and symptoms of the MS vary. The symptoms are divided into primary and secondary; the primary symptoms are caused by demyelination of the nerve fibers, and the secondary are result of the former. All symptoms can be divided into several groups (17):
Muscle symptoms: loss of balance; paresthesia or abnormal sensations in certain regions; pain due to muscle cramps; pain in shoulder girdle and legs; problems with movement of the limbs and with walking; problems in coordination and execution of small movements; scanned speech; uncontrolled muscle spasm of the limbs; muscle weakness.
Visual symptoms: diplopia; daltonism (color blindness); pain and discomfort in the eyes due to optic neuritis; fast uncontrolled movement of the eyes (nystagmus); loss of the vision.
Other brain and central nerve symptoms:decreased attention; reduced ability for judgments; reduced memory; depression; drowsiness and balance problems; facial pain; hearing loss; fatigue.
Sphincter symptoms: constipation; difficult start of urination; frequent urination; reduced body weight; incontinence.
Although MS cannot be cured, there are numerous treatments and therapeutic procedures that would slow the course of the disease. Generally there are three ways of dealing with multiple sclerosis: reducing the impact of symptoms, such as pain, fatigue and spasticity; reducing the length and severity of the relapses, usually with the use of steroids; improving the course and condition of the disease through the application of appropriate modified-medicament therapy (18).
Living with multiple sclerosis means living with an adjustment to the psychological and physical difficulties posed by the disease. At the onset of the disease the emotional burden of anxiety and disturbance is very big, affecting both the patient and those around him. The patients will be able to live a more-or-less normal life in the periods between the relapses, although living with MS requires a constant struggle with the symptoms during the relapses and dealing with the damage and progression of the disease, which leads to greater disabilities and restrictions.
When we discuss the quality of life in correlation to health, we mean aspects of health and quality of life that are affected by the disease. Areas for determining the quality of a person’s life are: physical functioning, emotional well-being and social interactions. Since 1992, many reasearches were conducted in order to determine the quiality of life people with MS have in terms of health, and the results suggest that patients with MS have a significantly lower quality of life compared with the general population and other groups of patients, such as those with epilepsy and diabetes (19).
The subject of this study is to give a clear picture of what multiple sclerosis is and how the chronic course influences the quality of life of the patients. Specifically, we wanted to present facts about the way of life of patients with multiple sclerosis and their independence in performing daily activities.
Taking into account the specifics of the research subject and the lack of a single register of people suffering from MS, the sample is convenient, including those people with multiple sclerosis who were available for examination and open for cooperation because the assessment was conducetd in their homes. 32 people diagnosed with MS, aged over 18, 12 male examinees and 20 females, members of the Assotiation of people suffering from MS were included in this study (Fig. 1).
We used the methods of structural, descriptive and functional analysis, the method of generalization and the comparative method. Data analysis (analysis of documents) scaling and inquiry were used as techniques, and as instruments we used a questionnaire that was composed of a combination of several assessment scales and indexes, adjusted to the specifics and characteristics of the sample and conditions in our country (Multiple Sclerosis Impact Scale MSIS-29, Barthel Index, Berg balance scale, Functional status questionar – FSQ, Index of disability, Frenchay Activities Index - FAI). The preparation of the questionnaire was based on the need to determinate the following variables: the index of disability, the degree of independence in performing daily activities as well as the degree of participation in social activities. According to the fact that in Macedonia it is almost impossible to make standardized assessment tools, the combination of assessment scales and indexes was made after an analysis of several relevant studies worldwide and a pilot study on a control group (20–24).
Computer processing of the data was performed with standard statistical program SPSS 11 for Windows XP, applying Chi square tests (Pearson χ2 test, Likelihood-ratio - LR, Linear by linear association - G) in accordance with the nature of the data. The difference at a level of p <0.05 was considered statistically significant difference.
Question 1: it concerned the educational level of the examinees, and it can be noticed that the majority of the respondents with multiple sclerosis 20 (62,5%) have high school education, they finished secondary school, with an equal gender distribution, while 12 examinees or 37.5% have a university degree, 10 female and 2 male respondents (Figure 2). Subsequent reduction of the functional abilities in patients with multiple sclerosis allows them to complete education in the period before the onset of the disease.
Figure 2.Education level in respondents with multiple sclerosis
Question 2: refers to the employment status of the respondents, and from the answers it can be concluded that there are nine employees in total (28%), 6 females and 3 males, and two of them are in an unstable working relation. Thirteen respondents (41%) are unemployed, 5 of them have lost their job after the diagnosis, 2 of which are aged bewteen 18 and 36, 2 of them between 36 and 45, and one from the oldest group, whereas 10 respondents (31%) are retired. The analysis of the answers by age indicates a statistically significant difference (p= 0.037), and it can be seen that four of the employees (36.4%) are aged between 18 and 35 and five (38.5%) are aged between 36 and 45, while the group of respondents older than 46 has no employees (Table 1). Considering the structure of the answers by age, one may notice that the biggest part of the employees are aged between 36 and 45, although looking into the group the number of unemployed is highest. From the obtained results it can be assumed that the respondents have found their job before the manifestation of the disease symptoms, which can also refer to the youngest category, where the distribution of the responses is the same as in the middle aged group