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.