Gozali Elahe, Safdari Reza, Ghazisaeedi Marjan, Rahimi Bahlol, Eslamlou Hamidreza Farrokh, Mehraeen Esmaeil
Department of Health Information Management, School of Allied Medical Sciences, Tehran University of Medical Sciences, Tehran, Iran.
Department of Health Information Technology, School of Allied Medical Sciences, Urmia University of Medical Sciences, Urmia, Iran.
Methods Inf Med. 2019 Nov;58(4-05):124-130. doi: 10.1055/s-0040-1701482. Epub 2020 Mar 13.
Despite recent advances in the field of medical sciences, children's developmental motor disorders (DMDs) are considered as one of the challenges in this area. Establishment of electronic systems for recording and monitoring children's DMDs can play an effective role in identifying patients and reducing the costs and consequences of the disease management. The aim of this study was to identify and validate the requirements for a registry system of children's DMDs in Iran.
The present descriptive-analytical study was performed in three main stages. In the first step, the literature was reviewed to identify the requirements. In the second stage, the information obtained from the literature review was used to develop a questionnaire for validating and selecting the requirements for an electronic system of recording DMDs in infants. In the final stage, the requirements were validated by selected experts (22 specialists). Data were analyzed using SPSS 20 software (IBM Corporation, New York, United States).
According to findings, the requirements of a registry system for children's DMDs were identified in three areas of demographic (24 data elements), clinical data (87 data elements), and technical (28 capabilities). In the demographic section, data elements of "family history of motor disorders" (mean = 1.18) and "drug allergy" (mean = 2.9) gained an average score of < 2.5 and therefore were not selected as data elements necessary for the registry system of data recording and monitoring children's DMDs.
In such developing countries as Iran, standard information recording and management is not properly done due to a large amount of information and the lack of comprehensive information registry systems. The findings of this study can help to design and establish information registry systems in the field of children's DMDs. Based on the findings of this research, it is recommended that future research be done to explore infrastructures necessary for providing a suitable platform to design and implement information registry systems in the field of children's DMDs.
尽管医学领域最近取得了进展，但儿童发育性运动障碍（DMD）仍被视为该领域的挑战之一。建立用于记录和监测儿童DMD的电子系统可以在识别患者以及降低疾病管理的成本和后果方面发挥有效作用。本研究的目的是识别并验证伊朗儿童DMD登记系统的要求。
本描述性分析研究分三个主要阶段进行。第一步，查阅文献以确定要求。在第二阶段，从文献综述中获得的信息用于开发一份问卷，以验证和选择婴儿DMD记录电子系统的要求。在最后阶段，由选定的专家（22名专家）对要求进行验证。使用SPSS 20软件（美国纽约IBM公司）分析数据。
根据研究结果，儿童DMD登记系统的要求在人口统计学（24个数据元素）、临床数据（87个数据元素）和技术（28项功能）三个领域被确定。在人口统计学部分，“运动障碍家族史”（平均值=1.18）和“药物过敏”（平均值=2.9）的数据元素平均得分<2.5，因此未被选为儿童DMD数据记录和监测登记系统所需的数据元素。
在伊朗这样的发展中国家，由于信息量巨大且缺乏全面的信息登记系统，标准信息记录和管理工作做得并不恰当。本研究结果有助于设计和建立儿童DMD领域的信息登记系统。基于本研究结果，建议未来开展研究，探索为设计和实施儿童DMD领域的信息登记系统提供合适平台所需的基础设施。
