Feasibility and Data Quality of the National Spinal Cord Injury Registry of Iran (NSCIR-IR): A Pilot Study

Chinese Journal of Traumatology, 2019

The National Spinal Cord Injury Registry of Iran (NSCIR-IR) is a not-for-profit, hospital-based, and prospective observational registry that appraises the quality of care, long-term outcomes and the personal and psychological burden of traumatic spinal cord injury in Iran. Benchmarking validity in every registry includes rigorous attention to data quality. Data quality assurance is essential for any registry to make sure that correct patients are being enrolled and that the data being collected are valid. We reviewed strengths and weaknesses of the NSCIR-IR while considering the methodological guidelines and recommendations for efficient and rational governance of patient registries. In summary, the steering committee, funded and maintained by the Ministry of Health and Medical Education of Iran, the international collaborations, continued staff training, suitable data quality, and the ethical approval are considered to be the strengths of the registry, while limited human and financial resources, poor interoperability with other health systems, and time-consuming processes are among its main weaknesses.

Spinal Cord Series and Cases

Study design Descriptive study. Objectives The aim of this manuscript is to describe the development process of the data set for the National Spinal Cord Injury Registry of Iran (NSCIR-IR). Setting SCI community in Iran. Methods The NSCIR-IR data set was developed in 8 months, from March 2015 to October 2015. An expert panel of 14 members was formed. After a review of data sets of similar registries in developed countries, the selection and modification of the basic framework were performed over 16 meetings, based on the objectives and feasibility of the registry. Results The final version of the data set was composed of 376 data elements including sociodemographic, hospital admission, injury incidence, prehospital procedures, emergency department visit, medical history, vertebral injury, spinal cord injury details, interventions, complications, and discharge data. It also includes 163 components of the International Standards for the Neurologic Classification of Spinal Cord Injury (ISNCSCI) and 65 data elements related to quality of life, pressure ulcers, pain, and spasticity. Conclusion The NSCIR-IR data set was developed in order to meet the quality improvement objectives of the registry. The process was centered around choosing the data elements assessing care provided to individuals in the acute and chronic phases of SCI in hospital settings. The International Spinal Cord Injury Data Set was selected as a basic framework, helped by comparison with data from other countries. Expert panel modifications facilitated the implementation of the registry process with the current clinical workflow in hospitals.

Iranian Journal of Public Health, 2020

Background: The National Traumatic Spinal Cord Injury Registry in Iran (NSCIR-IR), was implemented initially in three hospitals as a pilot phase from 11 Oct 2015 to 19 Jun 2016 and has been active in eight centers from 19 Jun 2016. Poursina Hospital, a trauma care referral center in Rasht, Guilan Province of Iran is one of the registry sites, and has been involved in registering eligible patients since 1 Jan 2016. This study aimed to identify the challenges and solutions for sustaining the NSCIR-IR in a regional center. Methods: This was a mixed-methods study. For the quantitative analysis, a retrospective observational design was used to measure case capture or case identification rate, mapping cases in the registry against those eligible for registry inclusion amongst the register of hospital admissions. For the qualitative component, data was collected using focus group discussions and semi-structured interviews, followed by thematic analysis. Results: From 19 Jun 2016 to 24 Jan ...

2018

Background and Aim: Traumatic Spinal Cord Injury (SCI) is one of the most traumatic events threatening patients' well-being and places a financial burden on health care system. The first step in determination of the exact impact of SCI is to estimate the pattern of traumatic injuries in a population and also the type of frequently occurred co-injuries. Hence, this study was conducted to assess the frequency of anatomy, type of spine injuries, and associated co-injuries in patients with trauma in Poursina Hospital of Guilan province in Iran. Methods and Materials/Patients: A descriptive cross-sectional study was carried out on traumatic spine patients admitted to the Poursina hospital of Rasht, a referral therapeutic center for trauma in north of Iran, in Rasht during 2015 to 2019. Data were extracted from the SCI registry of Poursina Hospital, Rasht, Guilan, Iran. Results: A total of 274 records were reviewed. Seventy-six patients were females and 198 patients were males. Mean±SD of age of the patients was 42.27±16.83 years. Based on this survey, most of the patients (43.8%) had SCI in lumbar region. Locked facet was seen in 12 patients. Fifty-seven patients (20.8%) complained about having pain. The median of VAS score was 6 (range=6). Coexistence of associated injuries (e.g. limb fractures, TBI, Internal bleeding, etc.) was found in 27.4% of the patients. According to ASIA (The American Spinal Injury Association) impairment scale, three patients (2.9%) had score A, and 100 patients (97.1%) had score E neurological defects. Conclusion: The most telling reiteration to be drawn is that men mostly suffered from spine trauma. Lumbar region was the most susceptible location of SCI. Moreover, most of the patients experienced score E (normal neurological charcteristics) according to ASIA.

2020

Background: Traumatic spinal cord injury (TSCI) can cause numerous adverse effects on the spinal cord and neural tissues. These injuries may have negative effects on physical and psychological health during the lifespan. Objectives: The present study aimed to investigate the epidemiology of TSCI in patients with trauma admitted to Bessat Hospital of Hamadan between 2007 and 2017. Methods: A cross-sectional study was conducted on 3,219 patients with traumatic spinal injuries admitted to Bessat Hospital of Hamadan between 2007 and 2017. Data were collected from the hospital information system. Data analysis was performed using SPSS. Quantitative data were expressed as mean, standard deviation, and frequency, and qualitative data were analyzed using the chi-square and Fisher's exact tests. The significance level was considered to be less than 0.05. Results: Mortality was significantly associated with gender (P = 0.001), age (P = 0.051), external causes of injury (P = 0.001), and ty...

Iranian Red Crescent Medical Journal, 2018

Background: Spinal trauma is a devastating event which could disturb a person's life. Objectives: The purpose of this study was to examine the prevalence and risk factors of spinal trauma in Rajaee trauma center, Shiraz, Iran. Methods: Data for this cross-sectional study were gathered from October 2009 to August 2015.The study was conducted through data extraction from the classified data of trauma patients admitted to Rajaei hospital. After performing some inclusion and exclusion criteria, 4630 cases were analyzed. The variables analyzed as the risk factors of spinal trauma included sex, age, cord injury, mechanism of injury, and injury severity score. Results: The prevalence of spinal trauma among traumatic patients was 7%; also, 3.7% of those with spinal trauma suffered cord

The journal of spinal …, 2009

Background/Objective: To determine the prevalence of traumatic spinal cord injury (SCI) in Tehran, Iran. Methods: A population-based study was performed. In a random cluster sampling, 100 addresses were selected as the starting point of the survey for each cluster consisting of 25 households. To expand the geographic dimension of each cluster, the interviewers skipped 3 of 4 houses in gathering data for each study unit. Each person with traumatic SCI was evaluated initially by a nurse and then by a neurosurgeon by physical examination and spinal imaging at the hospital or at home. Results: Ninety-seven percent of all surveyed agreed to participate in the study (2,425 households, or 9,006 persons). Four cases of SCI were identified. The point prevalence of SCI was 4.4 [95% CI 5 1.2-11.4] per 10,000 people. Over the 5-year period from January 2003 through January 2008, the reported incidence rate of SCI was 2.2 (95% CI 5 0.27-8.00) per 10,000 people. Conclusions: In this, the first published population-based study from Iran, the prevalence of traumatic SCI in Tehran ranged from 1.2 to 11.4 per 10,000 people. More research is required to determine the patterns and causes of SCI. Development of a nationwide SCI registry or surveillance system is fundamental to an understanding of the epidemiology, and hence the prevention, of this costly health problem.

Caspian Journal of Health Research

Background: Epidemiological knowledge of traumatic spinal fractures and spinal cord injuries (SCIs) is essential for preventive planning and health policy-making. The present study was conducted to investigate the epidemiological features of traumatic spinal fractures and SCIs in Guilan province, Iran. Methods: The present cross-sectional study was performed on all 15-80 years old patients with trauma admitted to Poursina Hospital from January 2015 to December 2017. The individual characteristics, time, place and mechanism of trauma and diagnostic characteristics of spinal trauma were gathered using trauma registry system. The incidence and epidemiological distribution of spinal fractures among traumatic patients were then estimated. Results: The incidence of traumatic spinal fractures was found to be 0.6% in 2015, 0.3% in 2016 and 0.2% in 2017. The men to women ratio was 2.33:1. Motor Vehicle Accident (MVA) and falls were respectively the most common mechanisms of trauma and their incidence were higher in rural communities than in urban communities. There was significant relationships between mechanism of trauma and the site of vertebral fracture (P-value = 0.02). Lumbar vertebrae mostly caused by falls while cervical vertebrae caused by MVA. The incidence of SCI in all the patients with spinal fractures was 18.23% in 2015-17. SCIs were found to be more prevalent in 15-45 year olds compared to other age groups. Quadriplegia (54.83%) and paraplegia (38.7%) were the most prevalent SCI-induced types of paralysis. The incidence of SCI was significantly associated with the site of spinal fractures, although it was not associated with mechanism of trauma. Conclusion: This study revealed that the incidence of spinal fractures were decreased in recent years and MVA is the major cause of spinal fractures. Preventive programs are recommended to focus on traffic engineering and the training of drivers and pedestrians, especially in high-risk populations.

Iran J Neurosurg, 2024

Background and Aim: Spinal cord injury patients are faced with many neglected side effects that threaten the health, wealth, and life of the patients and their families. For this purpose, the international spinal cord injury survey (InSCI) was conducted in 2017 by adding 22 countries to follow up the patients facing spinal cord injury. Iran as a developing country was added to the survey in 2022 focusing on the catastrophic health expenditures of spinal cord injury patients. The survey is named: The International spinal cord injury survey in Iran (InSCI-IR). Methods and Materials/Patients: This study will be performed in Guilan Province, Iran and the primary data of the patients will be gathered from the Poursina Hospital of Rasht and the Iranian National Registry of Spinal Cord Injury Patients. InSCI-IR contains two parts; the general questionnaire which gathers the data for the InSCI and the specific questionnaire which gathers data for calculating catastrophic expenditures. Results: It is estimated that 600 patients will participate in the study and more than 200 cases are faced with paraplegia or tetraplegia. The international questionnaire contains 11 sections on the living situation of patients with SCI, sociodemographic questions, injury characteristics, mental and physical health, feeling and work conditions, environmental factors, and access to health services. The catastrophic expenditure part contains questions about the cost of treatment, medication, caregiving, transportation, and household income loss related to spinal cord injury, wealth index, and household total income. Both parts will be edited in psychometrics processes.

BMC Public Health

Background: The Disability-Adjusted Life Year (DALY) was designed by the World Health Organization (WHO) to measure, compare, and analyze the burden of various diseases. To the best of our knowledge, this is the first study on the assessment of burden of traumatic spinal fracture (TSF) in an Iranian community. We estimated burden of TSF includes both isolated (iTSF) and associated injuries related to traumatic spinal fractures (aTSF) in Tehran, the capital of Iran, for the year 2006-2007 using DALYs. Methods: Burden of TSF was estimated based on information provided by the national data on Iranian trauma, data from the WHO, and literature data using disease modeling (DISMOD). Incidence of TSF and associated injuries were obtained from two population based studies and National Trauma Data Bank in Iran, while duration, and relative risk of mortality (RRM) were obtained from WHO data and the literature. The incidence, duration, and relative risk of mortality (RRM) were used to calculate DALY for TSF. To calculate DALY, the years of life lost because of premature mortality (YLL) were added to the number of years lost because of disability (YLD). DALYs were calculated separately for both iTSF and aTSF. In-hospital YLD and post-hospital YLL for iTSF and in-hospital YLL and YLD were calculated for aTSFs. Results: TSF incidence was 16.35 (95%CI: 3.4-48.0) per 100,000. The incidence of TSF in males was more than twice that of females. The largest DALYs were seen in 15-29 years. The highest burden of associated injuries of TSF was related to spinal cord and head injury. DALYs for aTSF were estimated to be 2496.9 years (32.0 DALY/100,000 population). The YLD and YLL were almost similar. Total DALY for iTSF and aTSF was 2568.9 years (32.92 DALY/ 100,000 population). Based on the risk extracted from the literature, post-hospital increased risk of mortality was increased by 1318 DALY (16.89 DALY/100,000 population). Conclusion: This study showed a considerable burden for TSFs mainly due to associated injuries and increased lifelong RRM in patients with TSF.