Quality of life and its affecting factors among patients with multiple sclerosis: a cross-sectional study in northwest Iran

Background: Multiple Sclerosis (MS) is one of the most important diseases due to its adverse clinical, social and economic consequences for affected people. Objectives: This study tried to assess the quality of life of the patients suffering from Multiple Sclerosis in East Azerbaijan. Methods: This cross-sectional study used the Multiple Sclerosis Quality of Life-54 (MSQOL-54) questionnaire for interviewing 300 randomly selected MS patients in East Azarbaijan province, Iran. The independent T-test, ANOVA and Tukey post hoc test were used to examine the relationship between demographic variables and quality of life, and all analyses were performed using SPSS19. Results: The quality of life score among the MS patients is 48.22. The "life satisfaction" is the best and "physical role limitation" is the worst quality of life aspect. There were significant relationships between marital status, education level, employment status, age of symptoms onset and years of illness with quality of life (P<0.05). Conclusion: The quality of life of the MS patients in East Azarbaijan province is lower than other parts of Iran and much lower than OECD countries.

Adjusted Life Years (QALY) index of different ages and genders (10). By the QOL, we mean "patients' perception of their life conditions demonstrated according to their expectations, goals, norms and concerns" (10).
With high prevalence (9), early occurrence in productive ages (11), long term survival after the diagnosis (12) and with the destructive effects on patients and families (13) MS is one of the main challenges of public health in different societies. It is the second cause of neurodegenerative disorders in working-age among adults making 50-80% of patients to be unemployed 10 years after the disease occurrence (14). Usually, MS is initiated with symptoms like sensory disturbances, inflammation of unilateral optic neuritis, diplopia, lhermitte, limb weakness, poor coordination and gait ataxia (15).
MS causes progressive disorder where symptoms appear gradually. About half of the patients are unable to do their home and work tasks after ten years of disease occurrence. After 15 years, half of them can not walk without help. After 25 years and half of them need to use a wheelchair (16). MS also causes a wide range of other disorders like depression, disappointment, cognitive disorders, lack of independence, pain, fatigue, anxiety, dysthymia, social problems, lack of confidence, and neuronal symptoms (17). This emphasises on proper evaluation and management of the effects on different physical, psychological, behavioural, and social features of the MS patients (18,19). There are studies available from the OECD countries (1)(2)(3)(4)(5)(6)(7)(8)(9)(10)(11). However, there is a dearth of literatures from the low-and middle-income countries (LMICs) such as Iran (20). Therefore, the current study was conducted to assess the quality of life of the MS patients in East Azerbaijan province; Iran. Also, the association between QOL and demographic and background variables of the MS patients was explored.

Methods Participants
The current cross-sectional study was conducted between 21st April to 28th May 2018. Three hundred patients were randomly selected from the MS patients register in East Azerbaijan province; Iran. The sample size was allocated by using Morgan table (21). Inclusion criteria was the MS patient was registered in the MS society and had received medical treatment for at least one year.

Randomization
All MS patients are registered in the MS Society of the East Azerbaijan Province. First, we have assigned numerical code to all the 1200 registered MS patients. We have determined sample size of 300 MS patients. Second, we have selected number two patient as the first selection randomly.
Finally, we have selected every fourth patient starting from two (e.g. 2, 6, 10, 14....) until we arrive at 300 MS patients. If any selected MS patient was not willing to participate we have invited the next person for the study interview.

Study Tool
This study was conducted using the Multiple Sclerosis Quality of Life-54 (MSQOL-54) standardized Iranian version (20,22). Questions on demographic and background variables of patients were added.
Twelve dimensions of the questionnaire were divided into two parts of physical health (physical problems, physical role limitations, pain, health perception and sexual function) and psychological health (emotional role limitation, emotional well-being, cognitive function, social function, health distress and life satisfaction). Quality of Life scores were 0-100 where the highest number suggested the highest quality. Data were collected through interview with the MS patients.

Data analysis
Mean ± Standard Deviation (SD) was presented. We used the t-test, ANOVA and Tukey test for assigning relations between the score of QOL and demographic variables. SPSS Software (version 19) was used. P˂ 0.05 was considered to be significant.

Ethical considerations
Principles of patients' freedom to accept or reject participation in the study or rights for withdraw from the study was assigned. Informed consent from the MS patients was obtained. Privacy and patients' personalities received full consideration and respect. Anonymity and assurance by using patients' data exclusively in the study was secured. The present study was approved by the Committee of Ethics of Tabriz University of Medical Sciences.

Results
The average age of participants was 37.15 (± 9.68). The youngest patient was 16 years old while the oldest was 68 years. Most of the patients were in their middle ages of life. About two third of patients were women. The age average of disease symptoms appearance was 27.18 (± 7.06) years and in average about 9.95 (± 7.06) years were elapsed from the first appearance of disease symptoms. Most of the patients were married, housewives, residents of Tabriz, and had diploma and lower level of education. All patients had basic Social Security Insurance. Only one third of patients had supplementary insurance (Table 1). By studying QOL among the patients in different dimensions it was revealed that they had the most problems in "physical role limitations", "emotional role limitations" and "health perception" and less problems in "life satisfaction", "pain", and "social function". Dimensions of "total physical health", "total psychological health" and "total QOL" obtained 48.27%, 47.95%, and 48.22% score respectively (Table 2).  Fig. 1 using Radar Chart.
In total, based on the ratings of scores of QOL, it can be seen that more than 40% of the MS patients had poor QOL. Only 30% evaluated that their QOL was at the appropriate level (Table 3). Children and teens had significantly higher level of QOL when compared to other age groups. The same trend was there when we compared young patients with middle-aged. People who diagnosed their MS when they were ˂20 years had higher level of QOL when compared to the people who were living at their 4th decade of their lives. People with less than 5 years of post-disease diagnosis had also higher level of QOL when compared to the others (Table 4).  (27). In the high-income countries such as Italy, Netherlands, Spain, France, Turkey, and the United States, the score of QOL among MS patients was reported for over 65 (28)(29)(30)(31).
It is evident that QOL among MS patients in Iran is lower than patients from America and European countries. The probable reason could be insufficient quality and ineffective quantity of healthcare services received by the Iranian MS patients and the absence of socioeconomic supports.
The current study indicates that "life satisfaction" has the highest and "Physical Role limitations" the lowest score of QOL. In the study by Haresabadi et al the lowest and highest score was respectively to "physical role limitation" and "cognitive functioning" (20). Marghati Khoei et al. also allocated the highest score to "emotional role limitations" and the lowest score to "health perceptions" and "emotional well-being" jointly (27). In the study by Sangelaji et al., the highest and lowest scores of QOL were respectively for "pain" and "physical role limitations" (32). Choubfroushzade et al. study allocated the highest and lowest QOL scores to "social function" and "physical role limitations", respectively (23). The lowest and highest scores were for "social function" and "physical role limitations" in the study by Mohammad et al. (25). In most of the studies conducted in other countries, physical problems, especially fatigue was considered to be the most disturbing negative consequences of the MS (28,33

Authors' contributions
All authors contributed to the design of this paper. AK and NJ contribute to the data collection. FG, AI and KD contribute to analysis and original drafting of the manuscript. All authors critically revised the manuscript and approved the final version.

Funding
This research received funding from Tabriz Health Services Management Research Center.

Availability of data and materials
The datasets used and/or analyzed during the current study are available from the corresponding author on reasonable request.

Ethics approval and consent to participate
Ethical approval was obtained through the Tabriz University of Medical Sciences Ethics Committee.

Consent for publication
Not applicable.
8. Figure 1 Comparison of MS patients' QOL in different aspects