SOME DETERMINATS OF QUALITY OF LIFE IN PATIENTS SUFFERING FROM MULTIPLE SCLEROSIS

Olivera RASHIKJ-CANEVSKA
Natasha CHICHEVSKA-JOVANOVA

University “Ss. Cyril and Methodius”, Faculty
of Philosophy, Institute of Special Education
and Rehabilitation, Skopje, R. Macedonia

Received: 22.01.2015
Accepted: 18.02.2015
Original article

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

Introduction

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).

Methodology

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).

Figure 1.Gender distribution of the respondents

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.

Results 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 Table 1.The employment status of the respondents with multiple sclerosis Question 3: Do you use any sort of walking aid? An affirmative answer was given by 15 respondents or 47% of the 32 respondents, in males the number of those who use and those who do not need walking aid is equal, while in females 9 respondents (45%) use a walking aid. A statistically significant difference was observed in relation to the age structure of the examinees (p= 0.041) (Table 2). In the group of examinees aged between 18 and 35, 8 examinees (72.7%) do not use any aid, 2 (18.2%) use stilts and one uses another kind of walking aid. In the category aged between 36 and 45, there are also 8 respondents or 61.5% which do not use walking aid, 1 uses stilts and 4 (30.8%) use another type of aid. Within the oldest group, one respondent does not have a need for a walklin aid, one uses a cane and 6 respondents or 75% use another type of aid; 5 use a wheelchair and one respondent has a person helping him. Table 2. Differences in the answers of the examinees with MS for the use of walking aids in relation to their age Question 4: Disability index, composed of more sub-questions, assessing eight categories of activities: dressing and grooming, initiation of the activities, eating, walking, hygiene, capture, grasp and everyday activities. A difference showing statistical significance (р=0.01513) can be found in relation to the age of the respondents (Table 3). In the group of examinees aged between 18 and 35, 8 respondents can carry out daily activities by themselves, 2 respondents use assistive devices and 1 person needs help from another person in the realization of the daily activities. As for the older group, 36 to 45, there is an equal number of an independent respondents 8, 3 respondents use prompts and 2 need the help of others. In the oldest category the presentation varies, the majority of the respondents, 4, could not realize everyday activities, 2 examinees use devices, 1 respondent can realize the activity on his own and one respondent needs help from another person. The results by age show parallel enlargement of the Index of disabilities and the age of the examinees, the older the respondents are that bigger the Index of disabilities. Table 3. Differences in the answers of the respondents with MS in relation to the Index of disability Question 5: Frenchay Activities Index, composed of 13 items concerning the frequency of performing housework, leisure activities, work and activities outside the home. Regarding age, there is a bigger statistically significant difference (p= 0.006) in the results obtained with the Frenchay Activities Index (Table 4). In the group of respondents aged between 18 and 35, while 2 of the examinees answered that they rarely participate in different daily activities, 5 respondents said they often did participate, and 4 claimed that they almost always participate in daily activities. Among the respondents at the age between 36 and 45, same as in the group of youngest respondents, the highest number, 6, is of those who frequently participate in everyday activities, but unlike the younger group, the number of those that rarely participate in activities is bigger than the number of those that almost always take participation in different activities, with 5 people rarely performing different daily activities, and two respondents who are almost always active. With the oldest respondents, the majority of examinees, 4 (50%) do not participate in the daily activities, three respondents (37.5%) rarely participate in any daily activities, and only one respondent often participates in the realization of different activities. The increase of age is reciprocal to the activity of the respondents, the older respondents are less active. It can also be noticed that only the oldest group holds memebers who are completely unactive. Bigger differences in the responses of the examinees can be noted regarding the visit of cultural-entertainingevents and participation in social events. Table 4. Differences in the responses of the examnees with MS by age in relation to the Activity index Question 6: Do you work the same interval (quantity of working hours per week) as before? The results refer to the interval of work. Once more, time indicates a statistically significant difference (р= 0.051) compared to the age of the respondents with MS (Table 5), calculated from the answers of 31 examinees from the total of 32. In the group of respondents aged between 18 and 35, 4 respondents pointed out that they have never worked the same as they used to, two respondents stated that they sometimes work the same as before the diagnosis, one respondent almost always works within the same time interval, and 3 examinees always work with an equal intensity as before they got the diagnosis. In the category of people aged between 36 and 45, four examinees answered that they never work the same as before, and 4 respondents answered that they almost always work the same as before the diagnosis, while two examinees remained working the same interval. In the oldest category, all eight respondents pointed out that they never work with the same intensity and interval like before. Table 5. Differences in the answers of the respondents with MS by age in relation to the interval of work Question 7: Multiple sclerosis impact scale. The largest percentage of the 32 respondents with MS, 43% face minimal insignificant problems in daily functioning, 32% (10 people) face moderate problems due to a physical and psychological impact of the disease, and large and extreme problems were noted in two female (10%) and 2 male (17%) respondents. A comparison of the results by age shows a large statistically significant difference (р=0.00953) (Table 6). Table 6. Differences in the answers of the respondents with MS by age in relation to the results obtained with the multiple sclerosis impact scale Discussion Correlating the educational level to the employment it can be seen that the biggest part of the employees, 6 respondents (67%) have a university degree, and only 3 respondents have a high school education, which points to the fact that the higher educational level offers greater choice of working opportunities and directly leads to a greater employment of the respondents, which is shown by the ratio of the educational level in unemployed, where only three respondents have graduated, and 10 (77%) have secondary education. Regarding the respondents which receive a disability pension, there is an opposite proportion of the educational level. 7 examinees (70%) have finished a secondary education, and three examinees are with a university degree, from which it can be concluded that with the older population, fewer persons have finished a graduated level. A greater part of the respondents which have secondary education as a result of their educational level and qualification have worked physical work and with the onset of the disease and the reduction of the functional abilities they have been forced to go on living supported by a disability pension before they reach the age of retirement. As mentioned before, our study was based on several similar studies provided in different countries and societies. In relation to our second question, Rocka and coworkers have findings concordant to the results of our research. In their study, they found that 90% of people diagnosed with MS were employed before they were diagnosed, and only 20% to 40% of them have kept their jobs for a period of 5 years after the diagnosis (25), but even though the respondents wanted to return to their workplace. Given that job loss is a significant stressful situation for patients with MS, causing loss of the professional identity and financial power, Rocka believes that employment is directly related to the overall quality of life for people with MS and their families. Similar results were obtained by Buchanan, Huang & Haufman. In their study, they found high correlation between permanence of the workplace (employment), course and symptoms of the MS and the dimensions of the quality of life based on the health condition (26). The data obtained by our third question concerning the use of walking aids is as follows: by correlation of the status of employment and use of a walking aid, it can be seen that only one respondent within a working relation uses a walking aid (help from another person instead using some aid), while 7 respondents who are unemployed also use a walking aid, with one using a cane, other stilts and five resorting to other kind of aids. A similar research assessing the use of a walking aids was conducted by Lezzoni, Rao and Kinkel, in 2007 in USA, and they have found that in a group of 703 respondents with MS, 434 patients (60.5%) use at least one walking aid. According to their findings, a commonly used device was a manual wheelchair, used by 63.4% of the respondents, 56.7% used a cane, 36.7% used electric wheelchairs, and 32.2% respondents used scooters (27). In correlation to the results of our research are the findings of Fruehwald from 2001. The statistically significant differences between the different age groups of respondents with MS was also observed in his study, when he points out that although there is not a significant association between the duration of the disease and the quality of life, the time when the disease was diagnosed and the age of the patient have significant impact on the mental aspects of the quality of life. Our standing that the functional abilities of the respondents decrease over the years affected by the aging process as well as the course of the disease, was also confirmed in Montel’s study from 2007, which states that in 80% of the respondents with MS а secondary progressive phase of the disease occurs (28). The execution of various daily tasks and activities has been observed and assessed by many researchers. Participation in the various activities of the daily life was examined by Motl in 2005 and it was pointed out that the multiple sclerosis is associated with the dramatic decrease of the physical activity in the patients. Bränholm and Erhardsson assessed the level of life satisfaction and participation in daily activities in 46 respondents with MS in Sweden. They found that people with MS have a significantly lower level of life satisfaction: happiness, self care, sexual life, family, and leisure compared to the 146 respondents from the control group. Bränholm and Erhardsson also found out that males and females with multiple sclerosis have a significantly lower participation in daily activities, especially in the domain of home/family activities. They also pointed out that people with MS fail to successfully cope with the effects of the disease, taking into account 60% of the examinees with MS who are dissatisfied with their lives and the loss of the leisure activities (29). Unlike most responses in our study that indicate small problems that the respondents with MS face, based on their personal perception, Isaksson in 2005, assessing the quality of life of people with multiple sclerosis found that this category of people have a tendency for lower values of their quality of life compared with the general population as well as people with other kind of chronic diseases (30). The study conducted by Pfaffenberger in 2006 points at the straight line relationship between the degree of the disease and the results obtained with the scale for assessment of the quality of life, and the better result achieved on the MS impact scale is associated with the lower degree of disability (30). Conclusion Correlating the previously mentioned data we can conclude that people suffering from multiple sclerosis as a result of the nature of the disease are not independent in the performance of the daily activities, guided by the results obtained with an implementation of the Index of disability, where 46.75% of the people with multiple sclerosis have restricted independence in performing daily activities as well as the results obtained by the MS impact scale, where 56.25% of the examinees face moderate, large and extreme problems in their daily functioning. The answers of the examinees obtained with the Frenchay activity index, pointing out that 31.25% of the respondents rarely participate in daily activities while 12.5% of examinees do not participate at all, confirm that it is necessary to train people with multiple sclerosis to adjust to the new situation and the environment in order to facilitate the physical and social integration. Generally, we might conclude that multiple sclerosis changes the quality of life of patients, something which is especially noticeable over the years. Our standing can be confirmed by the findings of many studies, Buchanan’s, for example. He theorized that recent adverse changes in the level of limitations can have a greater impact on the mental health, which in turn reduces the quality of life rather than the absolute level of physical disability (31). At the end of our study we have to point towards the limitations. We live in a small country in transition where there are numerous limitations for a research study, e.g every researcher has to find the sample by himself, and also has to prepare and adjust the assessment instruments on his own without any possibility for their standardization. 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