The current study indicated that, on average, MS patients spent an annual amount of 97,521,740 IRR (2,321.94 USD). The highest share of expenses (almost 72% of total cost) was related to direct medical costs and the lowest share (5%) to indirect costs. In a study by Imani et al. (2013) in Iran, the mean annual total cost per patient was estimated to be 24,475 USD and direct medical costs accounted for the largest share of the costs too (32). In the studies by Svendsen et al. (2012) in Norway and Berg et al. (2006) in Sweden, the annual cost of the disease was estimated to be 65,000 and 53,600 euros, respectively. In both studies, direct medical costs accounted for the largest share of costs (3, 23). Therefore the current study from Iran is in the line of findings from high-income countries (10, 33). The direct medical cost, direct non-medical cost, and indirect cost were 71.89%, 22.77% and 5.34% respectively in this study, in Iran. While the direct medical cost, direct non-medical cast, and indirect cost were 22.45%, 16.59% and 60.69% respectively in Norway (3); and were 46.91%, 21.10% and 31.99% respectively in Sweden (23). The cost of disease in different countries with varying contexts could not make comparable as the health systems, healthcare provider organizations, health status, structures, and mechanisms for payments, as well as healthcare utilization and the caregivers' perspectives are different (23, 33). It is important to consider issues such as low and declining value of Iranian national currency, the economic sanctions and, consequently, the scarcity of drugs, and high prices of the drugs due to the lack of manufactures in Iran.
Reviewing the conditions of MS suggested that the average score of EDSS in patients was 3.14, and about 70% of patients were in the mild group, and each of the groups of patients with moderate and severe illness comprised 15% of the sample. In Sweden, the mean EDSS score was 5.1, and the mild, moderate and severe levels of disease included 29, 46, and 25% of the total patients, respectively (23). In Norway, the mean score of EDSS was 4.3, and the mild, moderate and severe levels of the disease included 43.5%, 43% and 13.5% of total patients, respectively (3). The reason for the better status of the disease in this study may be attributed to early diagnosis and treatment because the mean age of the patients at the time of diagnosis in Sweden was 39 and it was 37 in Norway. But in the present study, the mean age of the patients of MS was 27 years. This has led to the fact that, despite ten years since the onset of the disease, patients are still in mild condition in Iran. Undoubtedly, part of this difference in the condition of illness can be attributed to the limitation of the present research, which could not access patients in severe condition because of their reluctance to participate in the study.
The current study supports the literature that there is a significant correlation between the severity of the disease (EDSS score) and various types of costs imposed on patients (23). The reason could be seen in insurance systems, social security and poor financial support for patients in Iran than in high-income countries (10, 33). For example, providing proper insurance system and necessary social security which cover all of required services with reasonable and payable cost for patients with MS and their families (Universal Health Coverage / effective coverage) could lead to proper financial protection and healthcare access. In this situation, the patients with MS can receive their required medical services in appropriate quality and quantity; consequently, the disease progress and its negative effects could be controlled. Also, costly care increases patients' concern on direct medical costs (as the major cost) and obliges them to neglect other indirect costs associated with the disease. A recent study from Germany demonstrated that healthcare costs increases with severity but the in-patient costs decreases (31). Our study actually demonstrated the same but in different context.
Comparison of the amount of costs imposed on patients at different levels of quality of life showed that direct medical costs in patients with severe disease were higher than those with mild illness and lower than those with moderate type of disease. The reason for high direct medical costs imposed on patients with severe condition is that they need more diagnostic, therapeutic and rehabilitation facilities. Moreover, the lower costs of disease in patients with severe conditions compared to moderate patients can be associated with bad economic conditions of the first group due to a high amount of total cost as well as a decrease in their earnings because of absence from work and losing their jobs. All these factors make the patients with severe disease take cheaper drugs with low efficiency or put some essential treatment services aside resulting decrease in productivity and extreme situation unemployment. This might be another reason why the severe MS patients were unwilling to participate in the current study.
The assessed characteristics majority (68%) patients in the current study were women (mean age 37.15 years) which is in lien of a Norwegian study (3), where, 65.1% patients were women (mean age 37.7 years) and a Swedish study (23), where 73% of participants were women (mean age 53.4 years). The majority of the patients were not employed in the current study which is supported by earlier studies from Scandinavian countries (3, 23). Middle aged unemployed women are mostly affected by the MS. MS patients in Iran has more (42.7%) university education than Swedish (25.8%) patients (23).
The lack of similar studies which assess disease costs from the patient/family perspective (analyzing incurred cost by the patients and their families, not the incurred cost by the health systems or society) in Iran or other developing countries especially in Eastern Mediterranean Region is noteworthy. The research propose some executive suggestions, including: strengthening the basic and supplementary insurance system for patients, strengthening their social security system, increasing governmental and charitable support, enhancing social work for patients, in particular, creating jobs and income generation for patients in proportion to their physical capacity, establishing comprehensive caring centers for MS patients to provide one-stop-shop type of services for all necessary cares, providing full coverage of patient cares by insurers, and providing government planning to ensure timely delivery of medicines and equipment to healthcare managers in Iran. Further studies in Iran and other developing countries are essential for estimating a national level cost of illness of MS. Also, to assess the share of MS costs in the household budget (% of average income spent on healthcare expenses or MS-related expenses) to estimate the scale and level of catastrophic expenditure and its induced impact on poverty in the MS patients and their families are warranted.
The current study is a cost of illness study which may have some criticism (10, 26, 33). However, it can provide important information as direct costs being the main cost driver, to ensue with marginal analyses which in turn help inform priority setting for MS for scarce resource allocation in economically struggling Iran by decision-makers.