Jahromi Niloofar, Eskandarieh Sharareh, Maleki Nazanin, Sistany-Allahabadi Narges, Sahraian Mohammad Ali
Multiple Sclerosis Research Center, Neuroscience Institute, Tehran University of Medical Sciences, Tehran, Iran.
Curr J Neurol. 2023 Jan 5;22(1):16-22. doi: 10.18502/cjn.v22i1.12612.
Multiple sclerosis (MS) is a debilitating, non-traumatic, neurological disorder in young adults and can reduce quality of life (QoL) by interfering with the ability to work, leisure activities, and routine living tasks. Various studies have shown the dissatisfaction of people with MS in different areas of care services. Regarding the patients' weakness with care and services, we sought to identify the challenges for patients with MS in receiving care and services in Iran. This cross-sectional study was conducted in 2016-2018 using a researcher-made questionnaire (designed by MS Specialists in an MS research center). The questionnaire examined the care challenges in four areas: 1) costs of medication, hospitalization, and rehabilitation services, 2) family support, insurance system, and job protection, 3) access to transportation system and treatment team, 4) quality of the provided care and services. Completed questionnaires were received from 945 respondents. The mean age of responders was 35.92 years. In total, 731 (77.8) participants were women and 208 (22.2) were men. Academic education was reported among 615 (65.3) participants and 367 (40.2) were employed during the study, while 99 (10.5) of the subjects were not able to walk a minimum of 20 meters. The prioritization of care services challenges was as follows: the cost of pharmaceutical services (49.1), lack of telephone counseling (47.4), uninsured home rehabilitation (44.7), lack of qualified care centers (41.2), and rehabilitation costs (40.2). We found that patients who could not walk at least 20 meters and unemployed individuals had more problems and lower QoL. The patients who had non-academic education had more challenges with the cost of medication, transportation, and lack of familial support. This study shows the challenges of MS patients in receiving health care in Iran that vary in age, education, employment, and ability to walk. As the abovementioned challenges are of great importance in determining the QoL of people with MS, an appropriate solution is provided in this study to overcome these challenges.
多发性硬化症（MS）是一种发生在年轻人中的使人衰弱的非创伤性神经疾病，它会干扰工作、休闲活动及日常起居能力，进而降低生活质量（QoL）。多项研究表明，MS患者对不同领域的护理服务不满意。鉴于患者在护理和服务方面存在的不足，我们试图确定伊朗MS患者在接受护理和服务时所面临的挑战。这项横断面研究于2016年至2018年进行，使用的是研究人员自制的问卷（由一个MS研究中心的MS专家设计）。该问卷考察了四个方面的护理挑战：1）药物、住院和康复服务费用；2）家庭支持、保险系统和工作保障；3）交通系统和治疗团队的可及性；4）所提供护理和服务的质量。共收到945名受访者填写的问卷。受访者的平均年龄为35.92岁。其中，731名（77.8%）参与者为女性，208名（22.2%）为男性。615名（65.3%）参与者有学术教育背景，367名（40.2%）在研究期间有工作，而99名（10.5%）受试者至少无法行走20米。护理服务挑战的优先级如下：药物服务费用（49.1%）、缺乏电话咨询（47.4%）、无保险的家庭康复（44.7%）、缺乏合格的护理中心（41.2%）以及康复费用（40.2%）。我们发现，至少无法行走20米的患者和失业者有更多问题且生活质量较低。未接受学术教育的患者在药物费用、交通以及缺乏家庭支持方面面临更多挑战。这项研究表明了伊朗MS患者在接受医疗保健方面面临的挑战，这些挑战在年龄、教育程度、就业情况和行走能力方面存在差异。由于上述挑战在决定MS患者的生活质量方面至关重要，本研究提供了一个适当的解决方案来克服这些挑战。
