Koç Yekedüz Merve, Doğulu Neslihan, Sürücü Kara İlknur, Öncül Ümmühan, Bakirarar Batuhan, Kullu Pinar, Ar Yilmaz, Köse Engin, Eminoğlu Fatma Tuba
Department of Pediatric Metabolism Faculty of Medicine, Ankara University, Ankara, Turkey.
Department of Biostatistics, Ankara University, Ankara, Turkey.
Telemed J E Health. 2022 Mar 30. doi: 10.1089/tmj.2021.0610.
Introduction:The COVID-19 pandemic has led to considerable changes in the health care system. Experts suggested that individuals protect themselves through social isolation during the pandemic, and consequently, the importance of telemedicine came to be understood for patients with chronic diseases. Telemedicine started to be used in developing countries where the appropriate infrastructure was lacking earlier. The present study investigates the level of satisfaction of patients with inherited metabolic disorders (IMDs) with telemedicine.
Methods:This prospective study was conducted by making use of a new video appointment program that ensures the privacy of the patients in video-based consultations. The sociodemographic characteristics of the patients, their clinical status, their views on the telemedicine system, and their levels of satisfaction were questioned.
Results:Overall, 174 patients were included in the study. The most common diagnoses were aminoacidopathies, lipid metabolism disorders, biotinidase deficiency, and lysosomal/peroxisomal diseases. More than half of the parents (67.6%) who lived in another city reported accommodation issues when coming to the hospital, and most believed telemedicine would save them time (93.1%) and money for travel (81.6%). The lack of laboratory and radiological tests (83.9%) was stated as the main disadvantage by most parents. Almost all the parents (96.6%) stated that they would opt for telemedicine if it became available in daily practice. The overall satisfaction rate was 94.6 (±10.1)/100.
Conclusions:The present research is the most extensive cohort study to date assessing telemedicine in patients with IMDs and it highlights the importance of telemedicine, especially in developing countries during the COVID-19 pandemic.
新冠疫情导致医疗保健系统发生了重大变化。专家建议，在疫情期间个人应通过社交隔离来保护自己，因此，远程医疗对慢性病患者的重要性开始得到认可。远程医疗在早些时候缺乏适当基础设施的发展中国家就已开始使用。本研究调查了遗传性代谢疾病（IMD）患者对远程医疗的满意度。
本前瞻性研究利用了一个新的视频预约程序，该程序可确保视频咨询中患者的隐私。对患者的社会人口学特征、临床状况、对远程医疗系统的看法以及他们的满意度进行了询问。
总体而言，174名患者纳入了研究。最常见的诊断为氨基酸病、脂质代谢紊乱、生物素酶缺乏症以及溶酶体/过氧化物酶体疾病。居住在另一个城市的父母中，超过一半（67.6%）表示来医院时存在住宿问题，且大多数人认为远程医疗能为他们节省时间（93.1%）和差旅费（81.6%）。大多数父母表示，缺乏实验室和放射学检查（83.9%）是主要缺点。几乎所有父母（96.6%）表示，如果日常医疗中能提供远程医疗服务，他们会选择使用。总体满意度为94.6（±10.1）/100。
本研究是迄今为止评估IMD患者远程医疗的最广泛队列研究，它凸显了远程医疗的重要性，尤其是在新冠疫情期间的发展中国家。
