Health Information Management Department, School of Allied Medical Sciences, Tehran University of Medical Sciences, Tehran, Iran; Sina Trauma and Surgery Research Center, Tehran University of Medical Sciences, Tehran, Iran.
Sina Trauma and Surgery Research Center, Tehran University of Medical Sciences, Tehran, Iran.
Chin J Traumatol. 2024 May;27(3):173-179. doi: 10.1016/j.cjtee.2023.10.005. Epub 2023 Nov 10.
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.
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.
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.
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.
伊朗脊髓损伤注册中心（NSCIR-IR）的目的是建立一个评估脊柱创伤护理质量的基础设施，本研究旨在调查 NSCIR-IR 是否成功为这些患者提供了必要的出院后随访数据。
这是一项于 2021 年 4 月 11 日至 2022 年 4 月 22 日在 NSCIR-IR 注册的 8 个中心（分别为阿拉克、拉什特、乌尔米亚、沙赫鲁德、亚兹德、卡尚、大不里士和德黑兰）进行的观察性前瞻性研究。患者根据其对护理资源的需求分为 3 组：（1）无手术的非脊髓损伤（SCI）患者（组 1）；（2）有手术的非 SCI 患者（组 2）；（3）SCI 患者（组 3）。评估工具是一个自我设计的问卷，用于评估 3 个阶段的护理质量：院前、院内和院后。前 2 个阶段的数据通过注册收集。院后数据通过进行随访评估收集。组 1（非 SCI 患者）和组 2（非 SCI 患者）进行电话随访，组 3（SCI 患者）进行面对面访视。本研究在 COVID-19 大流行期间进行。年龄和从损伤到随访的时间间隔数据表示为均值 ± 标准差（SD），应答率和随访丢失率表示为百分比。
共有 1538 个与 1292 名患者相关的电话随访记录在 NSCIR-IR 中注册。在总共的呼叫中，918 次（71.05%）与成功随访有关，但有 38 例死亡，因此被排除在数据分析之外。最终，收集了 880 名存活患者的院后数据。组 1 和组 2 的电话随访成功率分别为 73.38%和 67.05%，而组 3 的面对面访视成功率为 66.67%，这在 COVID-19 大流行期间非常困难。出院后的数据完成率范围为 48%-100%、22%-100%和 29%-100%，分别为组 1-3。
为了提高患者的可及性，NSCIR-IR 在数据收集过程中应采取措施，提高注册联系信息的准确性。关于 SCI 患者的随访丢失，NSCIR-IR 应寻找远程评估策略，或通过提供交通设施或经济支持等方式激励他们参与随访。
