Sustaining the National Spinal Cord Injury Registry of Iran (NSCIR-IR) in a Regional Center: Challenges and Solutions

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, the proportion of case capture (case identification rate) was 17%. The median time between case identification and data entry to the system was 30.5 d (range: 2 to 193 d). Thematic analysis identified a lack of trained human resources as the most important cause of low case identification rate and delay in data completion. Conclusion: Recruitment and education to increase trained human resources are needed to improve case capture, the timeliness of data input and registry sustainability in a regional participating site

The Design of a Quality Improvement Dashboard for Monitoring Spinal Cord and Column Injuries

Background: Interactive dashboards are a powerful tool for dynamic visualization and monitoring of patient performance and serve as a useful to for optimal decision-making. The National Spinal Column and Cord Injury Registry of Iran (NSCIR-IR) was designed to efficiently display and broadcast important patient care data. This has been achieved through an electronic dashboard display (graph and visual displays), rather than traditional static paper reports (text). Objectives: The objective of this study was to design and develop an electronic visual dashboard as a display system to monitor the quality of care in the NSCIR-IR collaborating centers. Methods: The indicators chosen were 20 pre-hospital and in-hospital quality of care (QoC) assessment tool indicators. A structured query was created from the NSCIR-IR system database to create the dashboard database. The Microsoft Power BI software was used. After data cleaning, filtering of erroneous records, and modeling, visual displays were designed and evaluated. Results: The dashboard reported on quality of care (QoC) for 2,745 patients registered in NSCIR-IR. 17% of registered cases had at least one data error in the quality of care indicators. These errors were automatically filtered by the system. The two most prominent weaknesses in (QoC indicators were delay in patient transfer by EMS (Mean and SD were 9.54 ± 13.8 h) and timing of surgical spinal cord decompression (114.5 ± 45.3 h). Conclusions: Electronic dashboards provide efficient and concise data summaries “at a glance”. However, their value and accuracy are dependent on the entered data quality. Identifying data source errors and correcting them continuously led to improved quality of data

Post-discharge follow-up of patients with spine trauma in the National Spinal Cord Injury Registry of Iran during the COVID-19 pandemic:Challenges and lessons learned

Purpose: The purpose of the National Spinal Cord Injury Registry of Iran (NSCIR-IR) is to create an infrastructure to assess the quality of care for spine trauma and in this study, we aim to investigate whether the NSCIR-IR successfully provides necessary post-discharge follow-up data for these patients. Methods: An observational prospective study was conducted from April 11, 2021 to April 22, 2022 in 8 centers enrolled in NSCIR-IR, respectively Arak, Rasht, Urmia, Shahroud, Yazd, Kashan, Tabriz, and Tehran. Patients were classified into 3 groups based on their need for care resources, respectively: (1) non-spinal cord injury (SCI) patients without surgery (group 1), (2) non-SCI patients with surgery (group 2), and (3) SCI patients (group 3). The assessment tool was a self-designed questionnaire to evaluate the care quality in 3 phases: pre-hospital, in-hospital, and post-hospital. The data from the first 2 phases were collected through the registry. The post-hospital data were collected by conducting follow-up assessments. Telephone follow-ups were conducted for groups 1 and 2 (non-SCI patients), while group 3 (SCI patients) had a face-to-face visit. This study took place during the COVID-19 pandemic. Data on age and time interval from injury to follow-up were expressed as mean ± standard deviation (SD) and response rate and follow-up loss as a percentage. Results: Altogether 1538 telephone follow-up records related to 1292 patients were registered in the NSCIR-IR. Of the total calls, 918 (71.05%) were related to successful follow-ups, but 38 cases died and thus were excluded from data analysis. In the end, post-hospital data from 880 patients alive were gathered. The success rate of follow-ups by telephone for groups 1 and 2 was 73.38% and 67.05% respectively, compared to 66.67% by face-to-face visits for group 3, which was very hard during the COVID-19 pandemic. The data completion rate after discharge ranged from 48% – 100%, 22% – 100% and 29% – 100% for groups 1 – 3. Conclusions: To improve patient accessibility, NSCIR-IR should take measures during data gathering to increase the accuracy of registered contact information. Regarding the loss to follow-ups of SCI patients, NSCIR-IR should find strategies for remote assessment or motivate them to participate in follow-ups through, for example, providing transportation facilities or financial support.</p

Post-discharge follow-up of patients with spine trauma in the National Spinal Cord Injury Registry of Iran during the COVID-19 pandemic:Challenges and lessons learned

PURPOSE: The purpose of the National Spinal Cord Injury Registry of Iran (NSCIR-IR) is to create an infrastructure to assess the quality of care for spine trauma and in this study, we aim to investigate whether the NSCIR-IR successfully provides necessary post-discharge follow-up data for these patients.METHODS: An observational prospective study was conducted from April 11, 2021 to April 22, 2022 in 8 centers enrolled in NSCIR-IR, respectively Arak, Rasht, Urmia, Shahroud, Yazd, Kashan, Tabriz, and Tehran. Patients were classified into three groups based on their need for care resources, respectively: (1) non-spinal cord injury (SCI) patients without surgery (group 1), (2) non-SCI patients with surgery (group 2), and (3) SCI patients (group 3). The assessment tool was a self-designed questionnaire to evaluate the care quality in 3 phases: pre-hospital, in-hospital, and post-hospital. The data from the first 2 phases were collected through the registry. The post-hospital data were collected by conducting follow-up assessments. Telephone follow-ups were conducted for groups 1 and 2 (non-SCI patients), while group 3 (SCI patients) had a face-to-face visit. This study took place during the COVID-19 pandemic. Data on age and time interval from injury to follow-up were expressed as mean ± standard deviation (SD) and response rate and follow-up loss as a percentage.RESULTS: Altogether 1538 telephone follow-up records related to 1292 patients were registered in the NSCIR-IR. Of the total calls, 918 (71.05%) were related to successful follow-ups, but 38 cases died and thus were excluded from data analysis. In the end, post-hospital data from 880 patients alive were gathered. The success rate of follow-ups by telephone for groups 1 and 2 was 73.38% and 67.05% respectively, compared to 66.67% by face-to-face visits for group 3, which was very hard during the COVID-19 pandemic. The data completion rate after discharge ranged from 48% to 100%, 22%-100% and 29%-100% for groups 1 - 3.CONCLUSIONS: To improve patient accessibility, NSCIR-IR should take measures during data gathering to increase the accuracy of registered contact information. Regarding the loss to follow-ups of SCI patients, NSCIR-IR should find strategies for remote assessment or motivate them to participate in follow-ups through, for example, providing transportation facilities or financial support.</p

Data Consistency of Two National Registries in Iran: A Preliminary Assessment to Health Information Exchange.

BACKGROUND: The National Spinal Cord Injury Registry of Iran (NSCIR-IR) and the National Trauma Registry of Iran (NTRI) were established to meet the data needs for research and assessing trauma status in Iran. These registries have a group of patients shared by both registries, and it is expected that some identical data will be collected about them. A general question arises whether the spinal cord injury registry can receive part of the common data from the trauma registry and not collect them independently. METHODS: We examined variables captured in both registries based on structure and concept, identified the overlapping period during which both systems recorded data in the same centers and extracted relevant data from both registries. Further, we evaluated the data for any discrepancies in amount or nature and pinpointed the underlying reasons for any inconsistencies. RESULTS: Out of all the variables in the NSCIR-IR database, 18.6% of variables were similar to the NTRI in terms of concept and structure. Although four hospitals participated in both registries, only two (Sina and Beheshti Hospitals) had common cases. Patient names, prehospital intubation, ambulance arrival time, ICU length of stay, and admission time were consistent across both registries with no differences. Other common data variables had significant discrepancies. CONCLUSION: This study highlights the potential for health information exchange (HIE) between NSCIR-IR and NTRI and serves as a starting point for stakeholders and policymakers to understand the differences between the two registries and work toward the successful adoption of HIE

The design of a quality improvement dashboard for monitoring spinal cord and column injuries

Background: Interactive dashboards are a powerful tool for dynamic visualization and monitoring of patient performance and serve as a useful to for optimal decision-making. The National Spinal Column and Cord Injury Registry of Iran (NSCIR-IR) was designed to efficiently display and broadcast important patient care data. This has been achieved through an electronic dashboard display (graph and visual displays), rather than traditional static paper reports (text). Objectives: The objective of this study was to design and develop an electronic visual dashboard as a display system to monitor the quality of care in the NSCIR-IR collaborating centers. Methods: The indicators chosen were 20 pre-hospital and in-hospital quality of care (QoC) assessment tool indicators. A structured query was created from the NSCIR-IR system database to create the dashboard database. The Microsoft Power BI software was used. After data cleaning, filtering of erroneous records, and modeling, visual displays were designed and evaluated. Results: The dashboard reported on quality of care (QoC) for 2,745 patients registered in NSCIR-IR. 17% of registered cases had at least one data error in the quality of care indicators. These errors were automatically filtered by the system. The two most prominent weaknesses in (QoC indicators were delay in patient transfer by EMS (Mean and SD were 9.54 ± 13.8 h) and timing of surgical spinal cord decompression (114.5 ± 45.3 h). Conclusions: Electronic dashboards provide efficient and concise data summaries “at a glance”. However, their value and accuracy are dependent on the entered data quality. Identifying data source errors and correcting them continuously led to improved quality of data

The data set development for the National Spinal Cord Injury Registry of Iran (NSCIR-IR): progress toward improving the quality of care.

Study designDescriptive study.ObjectivesThe 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).SettingSCI community in Iran.MethodsThe 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.ResultsThe 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.ConclusionThe 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