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.

National Spinal Cord Injury Registry of Iran(NSCIR-IR)-a critical appraisal of its strengths and weaknesses

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.