Neuromyelitis optica spectrum disorders registry system in Iran: Validity of data sets.

BACKGROUND: A targeted structure for recording, monitoring, and follow-up of patients with neuromyelitis optica spectrum disorders (NMOSD) is in demand. To obtain the correct and uniform standardized information registry system, it is necessary to use a data set that has good validity to help policy-makers systematically plan for improvements in the quality of care. The main goal of the present study was to develop a NMOSD data set for the national registry system in Iran (NMORI) and to evaluate the validity of the presented data set. METHODS: The NMORI data set consisted of baseline characteristics, disease and exposure history, background and past medical history, diagnosis and treatment, clinical features, imaging, and para-clinical findings. The content validity was evaluated by 18 experts from Iran, Japan, and Denmark by scoring each of the questionnaire items in term of transparency, simplicity, and relevance. According to the points given, the content validity index (CVI) and content validity ratio (CVR) scores were calculated and compared with the critical limit. RESULTS: The current study was designed as a 125-items data set which was considered valid. In terms of relevance 110 out of 125 items, simplicity 113 out of 125 items, and transparency 123 out of 125 items had Item-CVI>0.79. All Scale-level-CVI values were greater than 0.9, showing noticeable content validity. In this data set, 112 items had CVR > 0.49, which was considered an acceptable level of significance. CONCLUSION: The implementing of NMORI is important in a developing country such as Iran with significant increasing prevalence of this disease. This registry facilitates a uniform and valid diagnosis and is considered valid for clinical investigation and epidemiological research on NMOSD. Scientists and healthcare policymakers can rely on a validated data set in order to have access to accurate data.

The incidence and prevalence of crude and familial multiple sclerosis in Tehran, Iran in 2021.

Our registry-based cross-sectional study covered 27,508 PwMS in Tehran with a point incidence rate and prevalence of 7.87 and 194.62 per 100,000 in 2021, respectively. We found that the incidence and prevalence of MS in Tehran are still on an upward trend which requires general attention and measures to overcome. The proportion of men with a family history of MS was significantly higher. Whilst IMSS deals with economic difficulties, it continues to collect new PwMS to reach regional-level coverage in Tehran for better MS care services.

The National Multiple Sclerosis Registry System of Iran (NMSRI): aspects and methodological dimensions.

INTRODUCTION: Multiple Sclerosis (MS) as one of the most common causes of disability around the world requires a uniform standardized information registry system to help policy-makers systematically plan for care quality improvements. The aim of this study is to verify aspects and methodological scopes of MS registry system in Iran. METHODS: The National MS Registry System in Iran (NMSRI) is a population-based registry system that systemically identifies and collects all MS patients' data in a specific geographical area. It supports 22 medical science universities and 13 MS societies in 18 provinces of Iran. The information items taken from each patient to collect the data set and data are gathered from all available sources including public and private hospitals, clinics, neurologists' offices, and all MS societies. They are recorded in District Health Information System 2 (DHIS2) software. DISCUSSION: The NMSRI is a successful system of collecting MS patients' data. It can lead to positive results, such as updating patients' data to receive new treatments, fair allocation of treatment budgets, and providing researchers with novel ideas to carry out research projects.

Late-onset multiple sclerosis in Iran: A report on demographic and disease characteristics.

BACKGROUND: Today, it is estimated that around 5% of multiple sclerosis (MS) patients are in the late-onset category (age at disease onset ≥ 50). Diagnosis and treatment in this group could be challenging. Here, we report the latest update on the characteristics of Iranian patients with late-onset MS (LOMS). METHODS: This cross-sectional study used the information provided by the nationwide MS registry of Iran (NMSRI). The registrars from 14 provinces entered data of patients with a confirmed diagnosis of MS by neurologists. Patients with disease onset at or later than 50 years of age were considered LOMS. RESULTS: Of 20,036 records, the late-onset category included 321 patients (1.6%). The age-standardized LOMS prevalence was around 75 per 100,000 people. 215 patients (67%) were female. Median Expanded Disability Status Scale (EDSS) was 3 (interquartile range: 1.5-5). The majority of the cases (56%) suffered from relapsing-remitting (RR) course while 20% were diagnosed with primary progressive (PP) MS. Significantly higher proportion of male sex, PPMS, and higher EDSS were seen in the late-onset group compared with early-onset and adult-onset cases (p-value < 0.05). Seventy-five (23%) patients did not receive any disease-modifying treatment. DISCUSSION: The more prominent degenerative pathology of LOMS may be the underlying mechanism of the observed differences in comparison to non-LOMS. CONCLUSION: There are substantial differences and knowledge gaps regarding LOMS which could be the subject of further research.

Economic and Social Standing of Individuals in Iran Diagnosed with Multiple Sclerosis.

BACKGROUND: Multiple sclerosis (MS) may be affected by socioeconomic status (SES). This study aims to explore the determinants of SES among Iranian patients with MS and examine how these factors relate to disability and disease progression. METHODS: All patients with MS listed in the nationwide MS registry of Iran (NMSRI) until January 8, 2022, were included in this population-based study. RESULTS: Among the 5153 patients, most were female (74.5%), married (70.8%), and did not hold an academic degree (53.8%). Unemployment (OR: 3.75) and being unmarried (OR: 2.60) were significantly associated with Expanded Disability Status Scale (EDSS)≥6, and the time to progression was shorter in the unemployed group (P value: 0.03). There was also a significant negative correlation between the time to progression and the age at disease onset. CONCLUSION: The study suggests that providing financial and social support to MS patients and their families through investment could reduce both individual and societal burdens.

Prescription trends of disease-modifying treatments for multiple sclerosis in Iran over the past 30 years.

BACKGROUND: Iran, as a middle income country, is one of the places with high and rising prevalence of multiple sclerosis (MS). Regarding the substantial economic burden, reviewing the trend in prescribed disease modifying treatments (DMTs) could be of help. Here we studied the DMT information of nearly 14000 MS cases and its trends change for 30 years to improve health services to patients. METHODS: The population base of this descriptive-analytical (cross-sectional) study consisted of all MS patients in the nationwide MS registry of Iran (NMSRI), up to August 1, 2021. Registrars from 15 provinces, 24 cities, 13 hospitals,8 MS associations, 16 private offices, and 7 clinics had entered the data. RESULTS: Overall, 14316 cases were enrolled. The majority (76.1%) were female. The youngest and eldest patients were 5 and 78 years old, respectively. Diagnosis delay was under one year in most cases (median: 0, IQR: 0 - 1). Most (61.4%) had RRMS. Generally, platform injectables (IFN beta, glatiramer acetate) were the most used DMTs until 2010. It seems that introduction of newer agents (antiCD20s and oral DMTs) resulted in a decrease in the use of former drugs since around 2015. Some unusual practices are prominent such as using not approved DMTs for PPMS over the years, or administering high efficacy drugs like natalizumab for CIS. The results indicate the remaining popularity of first line injectable DMTs in female and pediatric patients. DISCUSSION: Mean age (SD) at onset in our study (29 ± 8.8) is near the statistics in Asia and Oceania (28 ± 0.7). Concerns about COVID-19 had a noticeable impact on administering high efficacy drugs like rituximab and fingolimod. However, in male patients this approach has not been the case. It may be related to more aggressive disease course in this group. The other possible explanation could be planning for pregnancy in female cases. The popularity of platform injectable drugs in pediatric MS may be related to its favorable safety profile over the years. Another point in this group, is the superiority of rituximab over other highly efficient medications.

Characteristics of COVID-19 in patients with multiple sclerosis.

BACKGROUND: Regarding the high prevalence of multiple sclerosis (MS) and COVID-19 in Iran, a multicenter study of COVID-19 in Iranian MS patients with is carried out to address the concerns of this population. METHODS: Data on MS patients with COVID-19 from nine provinces of Iran were entered in a web-based registry system, between July 2020 and March 2021. Among the COVID-19 symptoms, dyspnea, altered mental status, or those resulting in hospital admission were considered severe. RESULTS: A total of 397 eligible patients were identified. In addition, 310 (78%) were female. The mean age was 36.5 ± 9.5. 294 (74%) patients had relapsing- remitting form. Also, four patients (1%) expired due to COVID-19 infection. The mean duration of admission in hospitalized patients was 9 (± 5.3) days. MRI was performed on 111 (28%) patients after developing COVID-19. MRI changes were observed in 27 (24%) of these cases. MS drug was changed in 26 (6%) patients. Steroid use in the past three months (OR: 2.43, 95% CI: 1.003-5.88) (p value: 0.049) and antiCD20s (OR: 4.03, 95% CI: 2.41-6.68) (p value < 0.001) showed significant association with severe COVID-19 symptoms. CONCLUSION: The death rate of COVID-19 among MS patients (1%) is lower than the overall death rate of the pandemic in Iran (3%). Those who received steroid in the past three months may be at increased risk of more severe forms of COVID-19. There are still doubts about the effect of anti CD20s on COVID-19 severity.

Explaining the individual challenges of women affected by neuromyelitis optica and multiple sclerosis: A comparative content analysis Study.

INTRODUCTION: Multiple Sclerosis (MS) and Neuro-Myelitis Optica spectrum disorder (NMOSD) are an autoimmune condition. Both of them have unexpected and acute relapses. The aim of this qualitative study was explaining the individual problems experienced of women affected by NMOSD and MS. METHOD: Sixteen NMOSD patients and eighteen MS patients completed a face to face deep semi-structured interview. Participants were recruited from the MS ward in Sina hospital. After typing the interview, the data were analyzed using conventional content analysis, as recommended by Graneheim and Lundman (2005). Data analysis is managed with MAXQDA2018 software. RESULTS: In this study, a common theme for both disease groups was identified as "challenges arising from personal problems". The categories are named after each other and have many similarities, which in the NMOSD group include four categories including: "From uncertainty to the perception of threat", "Living with limitations", "Active coping until normalization" and "Facilitators of personal problems" appeared. In the group of patients with MS, five categories emerged: "perceived threat", living at a bottleneck, trying to deal with negative experiences, "facilitators of personal problems" and "problems related to physical rehabilitation". CONCLUSION: This qualitative study showed that the individual problems of the two groups of NMOSD and MS patients are somewhat similar. Also in the present study, people with MS need longer-term rehabilitation care than people with NMOSD, which should be considered and examined, a need that was less seen in people with NMOSD. The unpredictability of relapse in NMOSD and MS can have a profound effect on the daily lives of these people. Therefore, knowing the health and life problems of patients with NMOSD/MS can help health care teams to improve the quality of patient care.