Moulaei Khadijeh, Sheikhtaheri Abbas, Haghdoost Ali A, Nezhadd Mansour S, Bahaadinbeigy Kambiz
Medical Informatics Research Center, Institute for Futures Studies in Health, Kerman University of Medical Sciences, Kerman, Iran.
Department of Health Information Management, School of Health Management and Information Sciences, Iran University of Medical Sciences, Tehran, Iran.
J Educ Health Promot. 2023 Apr 28;12:130. doi: 10.4103/jehp.jehp_721_22. eCollection 2023.
If the data elements needed for patient registries are not identified, designing and implementing them can be very challenging. Identifying and introducing a Data Set (DS) can help solve this challenge. The aim of this study was to identify and present a DS for the design and implementation of the upper limb disability registry.
This cross-sectional study was conducted in two phases. In the first phase, to identify the administrative and clinical data elements required for registry, a comprehensive study was conducted in PubMed, Web of Science, and Scopus databases. Then, the necessary data elements were extracted from the studies and a questionnaire was designed based on them. In the second phase, in order to confirm the DS, the questionnaire was distributed to 20 orthopedic, physical medicine and rehabilitation physicians and physiotherapists during a two-round Delphi. In order to analyze the data, the frequency and mean score of each data element were calculated. Data elements that received an agreement more than 75% in the first or two-round Delphi were considered for the final DS.
A total of 81 data elements in five categories of "demographic data", "clinical presentation", "past medical history", "psychological issues", and "pharmacological and non-pharmacological treatments" were extracted from the studies. Finally, 78 data elements were approved by experts as essential data elements for designing a patient registry for upper limb disabilities.
In this study, the data elements necessary for the design and implementation of the upper limb disability registry were suggested. This DS can help registry designers and health data administrators know what data needs to be included in the registry system in order to have a successful design and implementation. Moreover, this standardized DS can be effective for integrating and improving the information management of people with upper limb disabilities and used to accurately gather the upper limb disabilities data for research and policymaking purposes.
如果未确定患者登记所需的数据元素，那么设计和实施这些元素可能极具挑战性。确定并引入一个数据集（DS）有助于解决这一难题。本研究的目的是确定并呈现一个用于上肢残疾登记设计与实施的数据集。
本横断面研究分两个阶段进行。在第一阶段，为确定登记所需的管理和临床数据元素，在PubMed、科学网和Scopus数据库中进行了全面检索。然后，从研究中提取必要的数据元素，并据此设计了一份问卷。在第二阶段，为确认该数据集，在两轮德尔菲法中，将问卷分发给20名骨科、物理医学与康复科医生以及物理治疗师。为分析数据，计算了每个数据元素的频率和平均分。在第一轮或第二轮德尔菲法中获得超过75%认可的数据元素被纳入最终的数据集。
从研究中总共提取了“人口统计学数据”“临床表现”“既往病史”“心理问题”以及“药物和非药物治疗”五类中的81个数据元素。最后，78个数据元素被专家批准为设计上肢残疾患者登记系统的基本数据元素。
本研究提出了上肢残疾登记设计与实施所需的数据元素。这个数据集可以帮助登记设计者和健康数据管理者了解登记系统需要纳入哪些数据，以便成功进行设计和实施。此外，这个标准化的数据集对于整合和改善上肢残疾人群的信息管理可能是有效的，并且可用于准确收集上肢残疾数据以用于研究和决策目的。
