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使用基于移动设备的应用程序对重症肌无力患者进行稳定性监测。

Stability monitoring of patients with myasthenia gravis using a mobile-based application.

作者信息

Alaei Tafti Emad, Ghazisaeedi Marjan, Sarraf Payam

机构信息

Department of Health Information Technology, School of Allied Medical Sciences, Tehran University of Medical Sciences, Tehran, Iran.

Department of Health Information Management, School of Allied Medical Sciences, Tehran University of Medical Sciences, Tehran, Iran.

出版信息

Curr J Neurol. 2023 Jan 5;22(1):35-43. doi: 10.18502/cjn.v22i1.12615.

Abstract

Failure in early diagnosis of myasthenia gravis (MG) and the risks of taking certain medications and undergoing surgery and anesthesia can lead to severe respiratory disorders and death. However, there are therapeutic measures that significantly control the disease and improve individual's functionality. First, an expert panel was formed, and a needs assessment questionnaire was prepared for the information elements and the capabilities required for the application and provided to neurologists with a subspecialty fellowship in neuromuscular diseases. Then, based on the analyzed results, the application was designed and created in 2 versions (physician and patient), and in 2 languages (Persian and English). Eventually, a questionnaire for user interaction and satisfaction was provided to 5 relevant physicians to evaluate the application. The results showed that neurologists considered all items of the needs assessment questionnaire to be 100% essential. The capabilities of the application included registering the medication name and dose, recording symptoms and complaints by the patient, completing standard questionnaires, online chat, medication reminder, sending alerts to the doctor when the patient is unwell, and providing a variety of reports. The usability evaluation showed that neurologists evaluated the application at a good level with the average score of 8.23 ± 0.47 (out of 9 points). In the long run, using this technology can reduce costs, improve patients' quality of life (QOL) and health care, change health behaviors, and ultimately, improve individual's health.

摘要

重症肌无力(MG)早期诊断失误以及服用某些药物、接受手术和麻醉的风险可能导致严重的呼吸紊乱和死亡。然而,有一些治疗措施可以显著控制该病并改善个体功能。首先,成立了一个专家小组,并针对应用所需的信息要素和能力编制了一份需求评估问卷,提供给有神经肌肉疾病亚专业奖学金的神经科医生。然后,根据分析结果,设计并创建了该应用的两个版本(医生版和患者版),以及两种语言(波斯语和英语)。最后,向5位相关医生提供了一份用户互动和满意度问卷,以评估该应用。结果显示,神经科医生认为需求评估问卷的所有项目都是100%必不可少的。该应用的功能包括登记药物名称和剂量、患者记录症状和投诉、完成标准问卷、在线聊天、用药提醒、患者不适时向医生发送警报以及提供各种报告。可用性评估显示,神经科医生对该应用的评价较好,平均得分为8.23±0.47(满分9分)。从长远来看,使用这项技术可以降低成本、提高患者的生活质量(QOL)和医疗保健水平、改变健康行为,并最终改善个体健康。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/af3b/10444596/b77f46aada57/CJN-22-35-g001.jpg

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